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.

Chemo+1

IMG_4234That’s how we denote it in Loren’s notebook — Chemo + 1, or C+1 for short. It’s the first day after chemo, and it’s not too bad. It’s an odd combination of energy and fatigue, punchy-ness and resignation.

The Dexamethasone makes Loren’s brain wildly active, and she has a million ideas at once. Some of them, of course, have to do with improvements for the house or her husband, and she rattles off lists of things we need to do — Right now! — and ideas for the future.

But simultaneously, she’s physically slower than usual, with slower movements and speech patterns. She pauses halfway through her thoughts and I wait — and wait — for the conclusion, which sometimes never comes.

When Loren gets going on something we need to fix or do around the house, she sounds so very much like Eeyore from Winnie the Pooh. “House blew down again, oh well.”

We laugh a lot on C+1, which helps with the slows, and Loren generally feels okay, just tired. Which really isn’t all that bad.

Copyright 2017. All rights reserved.
#cancer #breastcancer

Chemo Day

BB34E757-4089-4994-A848-7546B85F0F77Chemo day dawns bright and sunny, and we spend the morning doing dishes and tidying up, eating breakfast and getting ready for our days. My day includes a long day at work, which used to seem like a tough way to start the week.

But compared to Loren’s day, it’s easy. Loren will arrive at the cancer center at 10:00 am, and the first order of business will be a blood test. Then a short wait and a chat with the oncologist before three hours hooked up for the infusion.

Today is Round Five, so we know how this will go. Loren will arrive energized, hopped up a bit on Dexamethasone, and leave tired and flushed. She will be noticeably slower tonight, her movements and speech patterns fatigued by the drugs.

Loren got home about 5:00, sent me a text, and then slept until 7:30. She ate a small dinner, then watched TV and played on the Internet — looking at the stock market — until a little after midnight.

Chemotherapy has become so routine that I dropped Loren off in the morning and she took Uber home, because I was stuck at work. Very different from Round One, when I stayed with her most of the day.

And very different from six months ago, when I never imagined cancer would be a part of our lives.

Copyright 2017. All rights reserved.
#cancer #breastcancer

The Day Before Chemo

tom hills
Walking in the San Jose hills the day before chemo.

The day before chemo is a happy day, full of energy, full of life. But there’s also a shadow, an unknown of what the next round of toxic infusion will bring.

That’s because the effects of chemotherapy are cumulative and somewhat random. What was bad during round one, like nasal issues, is easy in round two, while something new inevitably pops up to take its place. Loren has, fortunately, been almost completely nausea-free, but there’s always the fatigue, which seems to be cumulative.

There’s also a shadow because we are nearing the end of Loren’s first six rounds of treatment. Sometime in March, or maybe April, the docs will take a look with another scan and we’ll see how things are going.

Externally, two things are positive: Loren does not have any coordination issues, though she is developing some minor neuropathy (numbness) in her fingers. And her cough is definitely gone. But we won’t know for sure how her tumors are doing until the MRI compares them with last time.

We are hoping for huge shrinkage. And doing our best to live each moment in the sun, despite the shadows in the future.

Copyright 2017. All rights reserved.
#cancer #breastcancer

This is How We Fight

chemo
Loren’s first chemotherapy session at the Stanford South Bay Cancer center.  Election day, 2016.

This is how we fight cancer. With the latest chemotherapy drugs, infused every three weeks in a surprisingly cheery infusion center.

Round one was kinda long. Loren was there all day, receiving each drug slowly, one at a time. The idea is to do it real slow the first time around, in case there are any adverse reactions.

No adverse reactions, we are happy to report. Loren did great and got herceptin, perjeta, and taxotare, as well as a supportive drug aimed at supporting her immune system.

Chemotherapy is a funny game. The goal is to attack the cancer cells directly with the targeted agents, and gently poison all of her fast-growing cells with the taxotare. That’s why the side effects include hair loss — your hair grows quickly — and digestive issues — your gut is lined with tissue that is designed to wear off and regrow quickly.

After chemotherapy, the game is to get the poisons out of your system as quickly and efficiently as possible. So Loren is drinking 2 L of water a day to help flush it all out.

Copyright 2017. All rights reserved.
#cancer #breastcancer