Assisted Living

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My wife, Loren, and I are moving into an assisted living community next month. Loren is moving in because she needs extra help to get through the day. I’m moving in because she doesn’t want to go by herself, and because I don’t want to stay home alone without her.

We are both 50 years old, which is young for an assisted living community, but Loren has stage four terminal breast cancer and I can’t take care of her by myself and hold down a job.

Loren was doing well through the end of last year – really well, in fact – but this year she took a turn for the worse. First it was a balance issue caused by swelling in the brain, which necessitated a course of dexamethasone, which has the effect of making Loren more stoned than Jeff Spicoli in Fast Times at Ridgemont High. Then it was another round of chemotherapy to address two large tumors that had sprung up in her abdomen.

Loren responded well to both the dex and the chemo, and, thankfully, the two big tumors are shrinking. But Loren now walks with a walker and has a limited amount of energy each day, though her energy is improving. Over the summer, I took care of Loren, but we realized in July that she needed at least 5 hours of home health care a day to get by.

Home health care is expensive, at least here in San Jose, and at least if you are not on Medicaid. One agency quoted me a flat rate of $32.00 a day, which works out to $3,200 a month for five hours a day, Monday through Friday. Add on weekends, and the cost rises to just under $4,500 a month.

We tried to arrange for that amount of care in early July, but the agency couldn’t find anyone willing to take a part-time (25 hours a week) gig. Full time care, eight hours a day, Monday through Friday, would cost us $5,120 a month.

Fortunately, Loren’s health rallied in July and we decided to hold off and see where she plateaus. She is doing well – much better than six weeks ago – but she still needs help. And she also wants help, so she doesn’t spend every ounce of good energy doing the dishes, or other chores, in order to take some work off my plate.

We are fortunate to have resources. And while spending money on assisted living is not what we expected to be doing in our early 50’s – our plans had more to do with expensive vacations and wine – spending the money on assisted living is the right thing to for us to do. It offers Loren assistance and autonomy, a chance to do more without me. And it offers me peace of mind, knowing that Loren is taken care of when I’m at work and not stuck at home, waiting for me to return.

Copyright 2018.
All rights reserved.

Soul Selfie

My iPhone recently took a picture of my soul, which, as you might imagine, caught me by surprise.

It happened the other day while my wife, Loren, and I were cooking dinner and watching the end of some game on TV. I was scrolling through photos on my phone, sending pictures to Loren’s brothers in Canada and Australia via WhatsApp, and to my brother and his wife via text message.

Loren and I had gotten all gussied up for our passport photos that afternoon, only to discover after a long walk downtown to the San Jose Fed-Ex print and ship store that it was closed on Sundays, despite what it said on the website.

No bother. We got Philz coffee and took our own photos in front of a colorful mural on First Street, just south of the old post office.

Back home, I showed Loren two of the photos on my phone. She was wearing a hat and sunglasses in one, just a hat in the other.

“You look good,” I said, “even in the one without sunglasses.”

Loren looked over at my phone and smiled. “I do look good,” she said. “But imagine how good I looked before.”

“Before” is before metastatic breast cancer, before whole-brain radiation that left Loren with permanent male-pattern baldness.

“I always did look good in hats,” she added.

I agreed, and scrolled back through thousands of photos until I finally came to “before:” the summer of 2016.

Loren did have a lot of hair, and she did look good in hats. But the quality of our photos was different back then, oddly curated and impersonal. For every selfie or photo with other people, there were 10 reference photos, perfect for reminding ourselves what we were doing or where we were going. Perfect for posting on Facebook.

They weren’t exactly lifeless, just clean and easy to interpret by people who were not there. Not messy and hopelessly contextual, full of people and full of life, difficult to interpret unless you were there.

Our lives were better before cancer — I will never say that serious illness is a good thing, or a blessing in disguise. But my phone showed me that Loren and I are better at living our lives after it.

With a Perspective, I’m Tom Moriarty.

Tom Moriarty teaches writing and rhetoric at San Jose State University.

Originally broadcast on KQED, San Francisco NPR: https://www.kqed.org/perspectives/201601136952/soul-selfie

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