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.

There’s No Good Way to Learn You Have Cancer

textsI think we rooted for lymphoma on Wednesday.

I lose track, because we rooted for so many terrible diseases that week. I know it was after we stopped rooting for a rare, life-threatening infection, something that would explain the lesions and swelling in my wife, Loren’s, lungs and brain. We rooted for that all day Tuesday, the day I cried in the shower and whispered and prayed, “Please don’t let this be the way you take her away from me. Please don’t let this be the way.”

I know it was long after two young, long-faced ER doctors walked into our lives Monday night, closed the door, and leaned against the counter.

“We got the results from your CT scan,” one of them said, taking a deep breath. “It looks like you have metastatic brain cancer. We’ll give you a moment.”

I remember now. We rooted for lymphoma on Thursday, the day before a histologist confirmed that Loren had stage four breast cancer.

*****

Loren didn’t seem quite right the week before her diagnosis. We were in Sonoma County, visiting wineries. Loren was tired and took a nap most every afternoon. She was unusually agreeable, too – going along with my suggestions without her usual debate – but she was getting over a bad cold and had just finished teaching summer quarter at Palmer College of Chiropractic.

But Loren had trouble walking. Not all the time, but every now and then, especially when getting out of the car. She stumbled after a minute or two, weak on the left side, and needed to sit down for a moment. But then she was okay.

We thought it might be a pinched nerve – or worse, maybe a minor stroke. The young ER doctors at O’Connor hospital in San Jose thought it was a stroke, too, and they tested her repeatedly.

“Raise both arms, smile, don’t let us push down on your foot,” they said.

“Can you feel this?” they asked, lightly touching both sides of her face.

“Can you feel that?” they asked, lightly touching both sides of her legs. “Hmm. It doesn’t look like a stroke, but we’re going to order a head CT just to be sure.”

****

Our primary care physician confirmed the biopsy results and handed us off to an oncologist at the Stanford Cancer Center South Bay Friday morning. He met with us in person – “This isn’t the kind of thing you do over the phone,” he said – and wished us well. “You’ll have to decide what you want to do with your time,” he added. “Maybe keep working, maybe not. You should decide what’s important to you.”

Since then, Loren and I have talked about end of life directives and our general lack of regrets. We talk about money and make financial plans. I plan for the short term and Loren plans for the long term. I tell Loren I will take care of her and her job is to get well. She tells me her job is to figure things out now, while she’s well, so she can take care of me when she’s gone.

It’s overwhelming, but the outpouring of love and support from friends and family near and far, new and old, is overwhelming, too, but in a good way, a way that almost evens the score. Our friends Mike and Sharon dropped everything and drove up from L.A. the day they heard the news. Loren’s brothers flew in from Canada and Australia, and everyone is making plans to come see us in the next couple of months. We’re scheduling the visits one at a time, not because Loren’s not up to a crowd, but because we want to savor each and every person, each and every moment we have together.

Loren says I should remarry after she’s gone. But I don’t know what I will do. It’s too soon for that kind of thinking.

I do know, however, that if you are lucky enough to have a great love in your life, it’s inevitable that one of you will die first and the other will be left behind to die alone.

I’m happy it’s most likely going to be me.

Originally published November 8, 2016, in the San Francisco Chronicle.

Copyright 2017. All rights reserved.

A Story I Don’t Want to Tell

At a winery near Hollister.

My wife, Loren, was recently diagnosed with stage four breast cancer. I do not know how long she will live, or when she might die, so this story has no foreshadowing, no fancy or reassuring literary devices. It will just happen, like life, and I hope I have the courage to tell it all the way through.

I don’t know if this story will have any value, or if it will teach us anything at all about how to live each day as it comes, perhaps with a little bit of grace. I think this story might help me feel less alone — help all of us feel less alone — as we live our lives the best we can, especially in the face of serious illness.

This is a story I don’t want to tell. This is a place I don’t want to go. But this is where cancer is sending us.

So we go.

We invite you to join us.

Copyright 2017. All rights reserved.
#cancer #breastcancer