Assisted Living

belmont

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

Trump, Scott are right on blocking gun sales

Sometimes the Republican Party inadvertently gets it right.

Such is the case with the shooting last week at Marjory Stoneman Douglas High School in Lakeland, Fla. Instead of blaming the ridiculously easy access Nikolas Cruz, the accused killer, had to guns, including assault-style rifles like the AR-15, the GOP blamed the FBI and the Florida Department of Children and Families for the tragedy.

By complaining that the FBI, in particular, should have done more to stop the shooter, Gov. Rick Scott and President Trump are subtly suggesting — and this is where they get it right — that law enforcement officials, and even social service agencies, should have the power to block suspicious individuals from buying guns. And if those agencies’ assessments of an individual suggests that he might be seriously considering an attack, police and social workers should have the power to confiscate his guns as well.

Republican leaders, and their surrogates on TV, pointed out that the FBI did not investigate a tip it received on Jan. 5, when a person close to Cruz told the bureau about Cruz’s “desire to kill people, erratic behavior and disturbing social media posts.” It was the second tip the FBI received about Cruz in four months, but instead of investigating and potentially thwarting the attack, the bureau let it sit on a desk.

Republican leaders also pointed out that the Florida Department of Children and Families received a tip about Cruz almost a year and a half before the shooting. A social worker visited Cruz and talked with him in his home, but determined that he was not a danger to himself or anybody else, an assessment we now know was terribly wrong.

In their zeal to keep guns out of the conversation at all cost, the GOP has accused the FBI and the Florida Department of Children and Families of incompetence. Scott called for FBI Director Christopher Wray’s resignation on Friday, saying, “Seventeen innocent people are dead and acknowledging a mistake isn’t going to cut it.”

And, over the weekend, President Trump added on Twitter, “Very sad that the FBI missed all of the many signals sent out by the Florida school shooter. This is not acceptable. They are spending too much time trying to prove Russian collusion with the Trump campaign — there is no collusion. Get back to the basics and make us all proud!”

Gov. Scott and President Trump are not suggesting that the FBI or the Florida Department of Children and Families should have the power to pre-emptively arrest suspicious individuals before they commit a crime. But they are suggesting they should have the power to disarm them and limit the damage they might cause.

I know this sounds unusual, but all of us should support President Trump and Gov. Scott for their bold leadership on this issue: That is, for putting the safety of our children above the special interests of certain gun owners who believe that any form of gun control is a violation of their God-given, constitutional rights.

And we need to do it quickly, too, before the National Rifle Association comes out of hiding — after another week or so has gone by, out of respect for the victims, of course — and not so gently points out the implications of what President Trump and Gov. Scott, in their eagerness to leave guns out of the conversation, have inadvertently endorsed.

Originally pubkished in the San Francisco Chronicle: https://www.sfchronicle.com/opinion/openforum/article/Trump-Scott-are-right-on-blocking-gun-sales-12628422.php

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

progression

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

Not Good News

punch other way

But not exactly bad news, either. Just not the news we wanted to hear.

Last week, my wife, Loren, who was diagnosed with metastatic breast cancer late last year, received the results of her latest brain scan. It shows many lesions shrinking, which is good, but others starting to grow again. And, most worrisome of all, a new lesion that wasn’t detectable before.

I got the news over the phone, while Loren was away at yoga. Her radiologist asked to speak to Loren, but she was not home, so I asked if she would like to leave a message instead.

She said, “This is Loren’s doctor, and I’m calling with the results of her MRI. Please tell her I’ll call back tomorrow, maybe sometime around noon.”

I said, “This is Loren’s husband, and can you, maybe, give me hint about what they say?”

She paused for a moment. “There’s good news and bad news. The cancer in her spine is gone, completely wiped out. But she has increased activity in parts of her brain. Very small lesions. I’m going to recommend CyberKnife, which she can do at the main campus. It’s more targeted than what I can do down here.”

I took notes and thanked her for the call. I paused. She paused. I said, “Alright.” She said, “Okay.” And I hung up.

Bad news always seems to come this way. First we learn there’s something wrong, then we get more details, more information. After a day or two, we have a vague sense of what’s going on, what’s next, and what it all means. Not the full picture, of course, because the only real question we have is: How much time does Loren have? And how much of that time is going to be good?

Nobody knows. And nobody can know. We can only guess, and look at statistics, and hope and pray that Loren is an outlier on the good side of the curve.

All we can do is get on with our lives. All we can do is spend every moment we have as best we can, together and happy, with family and friends. Just like everyone else. Just like Oprah says.

I just wish it wasn’t so hard.

Copyright 2017. All rights reserved.
#cancer #breastcancer #caregiving #radiation