Balance

Life is what happens to you when you're busy making other plans. - John Lennon

What distracts me from the blog? I seem to publish on a six-month schedule, which is positively snail-mail. I asked myself this question recently and found I wasn't just disappearing from the blog, I was disappearing from my life for several months: not talking or e-mailing or calling anyone outside of my immediate family.

When you're faced with circumstances in life over which you have no control, you'll search for something that gives you that feeling. Sometimes these behaviors are self-destructive, very immediate and apparent: alcohol, drugs, violence, or other activities that damage mind, body, and life.

Other activities are good and constructive in themselves. Work, in moderation, is a great way to relieve stress, occupy your mind, and find meaning and fulfillment. If you're good at the work you do, and if you like what you're good at, then the satisfaction is magnified.

To a point. Anything taken to its extremes can become addictive and destructive, despite the best intentions.

I'm fortunate. I enjoy the work I do right now and I'm good at it. I especially enjoy the people I work with, the intellectual challenges of the projects, and the chance to help other people. I've been very fortunate to work in a company where my work is valued and where my employers put high value on personal relationships, especially on spending time with your family. All these are reasons why I find my work so satisfying and meaningful. It's intoxicating.

That's why I threw myself into work over the last several months, ignoring almost everything else in my life - this blog, e-mails, phone calls, friends, physical fitness, household duties, and even my wife. Jean is the true north in my life: she is the most important, and work is a distant 2nd, 4th, or 10th in my life priorities. Yet I spent 80, 90, or 100 hours a week away from her. Why would I do that?

Faced with Jean's health problems, which do not improve despite our best efforts, and the choices she faces in the near future, I threw myself into work. Threw myself like a diver plunging over a cliff or a man guzzling the first shot on a drinking binge. I wanted more of the satisfying feeling - I'm in control! I can accomplish something! I made a difference! I tried to do more and take on more. (Some people say you can't work too hard or too much at the expense of anything else. I've met these some people. I'll address this peculiar American illness later.)

Again, I'm fortunate. My employers spotted my swamped schedule and time mismanagement. A spurt of intense hard-work is sometimes necessary and important, but a long-term, maxed-out, over-tasked employee is bad for business and personal life. I'm never afraid to ask for help, but when I'm so distracted or engaged, I am unaware that I should ask for help.

I'm now searching for balance. It's not the first time, nor will it be the last. With balance and moderation in the last few weeks, I've found my mind and body better able to handle stress and change. There's a lot of that coming our way. There will be difficult decisions for us in the future. We'll need each other more than ever, and at a certain point, I won't be able to escape into the satisfaction of work (or anything else). I will be there with Jean to deal with what comes. And hopefully I will not be so distracted that I can't talk with you about it.

Quarterly Report

Every three months Jean gets checked out by the doctors at Mount Auburn. The purpose of these tests is two-fold:
(1) to assess how she's healing from her previous procedure;
(2) to determine if the cancer has returned.

Jean's undergone these checkups for six-going-on-seven years. Her last procedure was the surgery last March at Beth Israel, in which the doctors removed tumors from her bladder and tried to save her right kidney by transplanting it lower in the pelvis. The transplant failed, she lost the right kidney, and the surgeons accidentally damaged a nerve in her right leg, temporarily cutting off her ability to walk, use, or feel anything in the leg. She spent much of the last year recovering from this surgery. She regained most function in her right leg, which is great, but she's still suffering massive diarrhea and loss of nutrients, which is not so good. I'd say it was a hell of year last year, but in the context of everything she's been through, it's been a hell of a millenium.

There's a enormous amount of scheduling and coordination that occurs during the Quarterly Report.
- CT Scan
- Blood work
- Meeting with her oncologist, Dr. Lange
- Meeting with her urologist, Dr. Kerian
- Meeting with her surgeon, Dr. Nauta
- Meeting with social workers, counselors, and therapists
Each quarterly checkup is combination of some or all of the above.

There's also an enormous amount of anxiety. Why? The appointments are hassles unto themselves. Ask Jean about drinking contrast - go ahead, it's very tasty. Juggling professional work, personal life, and 2-3-4-or-5 doctors' visits in the space of week is stressful. We no longer live in Somerville, so the commute is much longer to Mount Auburn and Beth Israel.

And we're anxious about the Big Bad Thing. The cancer has recurred three times since it was dicovered in 1999. It recurs in 18 months or less. As we approach each quarterly checkup, we wonder and dread: Is this it?

We deal with the anxiety in a variety of ways. Mostly we distract ourselves: with work, television, more work, household chores, home improvement, going to the gym, staying up too late, and taking on too much work. A new home affords lots of opportunities for chores. Doing the laundry, or cleaning the floors, or weather-stripping windows, is like meditation: it takes focus and it soothes the mind.

Jean had the CT scan on Friday. We'll see Dr. Lange next Monday. Until then, there's so much to be done. We'll let you know what we find out when we find out.

How To Wake Up In The Morning

Several months ago, someone asked me casually, "How do you wake up in the morning?" It's a simple question.

The question within it was, "When your wife is facing a chronic, life-threatening and incurable illness, how do you go on?" And lurking under THAT question, like a long buried mummy slowly coming back to life, is the question, "Why?"

My answer at the time was succinct and profound. "Um. I don't know."

I never have given much thought. Usually there's so much going on - medical crises, housekeeping, work, and everything else in life that occupies us - that I don't have time for self-examination.

This is by no means a complete list, but it's just some of the way I get my day started.

1. I open my eyes. This helps immeasurably. The mornings I failed to open my eyes were ones I thought I was putting on a pair of pants to find out later in the office I was only wearing a dress sock.

2. I move my body. Let's not be drastic. This doesn't necessarily involve leaving the bed or doing downward dogs or push-ups. Instead, I shift my limbs around, slowly and diplomatically. Is my wife still there? Yes, she is. I try not to disturb her. She needs her sleep. Because of the intestinal side fx of her illness - a very short bowel means very frequent trips to the bathroom - her body doesn't absorb all the nutrients that the average body (a "normally-bowelled" body) needs to get through the day. Plus, she is not now nor ever was a morning person. So I let her sleep.

3. The alarm goes off. I jerk my limbs, fumble for the clock, accidently raise the volume of NPR to a low jet roar, and wake up Jean.

4. I make inquiries. After a low grumble from the other side of the bed, I ask the following question.
"How many times?" This refers to bathroom visits.
Her answer is one of the following:
a. Several. (I say I'm sorry.)
b. A couple. (Not bad. In sports terms the equivalent of your ball team making it to the playoffs, but not getting to the finals.)
c. None. (I do a small dance of joy, jerking my limbs, and further waking Jean.)

5. I get up and spring into action. This usually happens during emergencies, hospital stays, complications in the middle of the night. During times like these, I respond like General Ulysses S. Grant, who possessed what's called "four o'clock in the morning courage". The success of my courage always depends on finding my pants. (See #1)

6. I don't get up. I'm awake, but I just don't feel like getting out of bed. Or putting on clothes. Or going to work. Or eating. Or doing anything. Sometimes it's a protest over a late night of work, or not getting any sleep because of medical problems, or because we're in a hospital (a place as conducive to sleep as the Motel 6 next to Route I-95). Sometimes it's a sign of depression: a normal human reaction to extraordinary inhuman and over-whelming circumstances. Thanks to Jean, family, friends, and counselors, these mornings aren't so frequent. But they do happen. It's natural and no shame in it.

7. I go back to sleep. The most natural human reaction, especially on a cold winter morning before the crack of dawn. And I don't have to worry about pants.

A Lion in the House

If you'd like to know one of the reasons why I'm riding in the Pan Mass Challenge, there's a documentary now showing on PBS that you should watch. It's called A Lion in the House.

There's no shortage of stories in the media about cancer. Unfortunately, most of it is crap. Brief features on TV news magazines tout the latest miracle developments and fads, but these are premature, unsubstantiated, and often downright misleading. Newspaper stories and talk-shows feature interviews with cancer survivors, usually emphasizing the upbeat (they're alive and a valuable member of the community) and omitting the downers (the illness, the hospitalization, and the fact that many do not recover).

And don't get me started on movies! 99% of movies slavishly follow this plot. A person, maybe too busy with work or some other distraction, contracts a serious disease. After some moderate inconveniences of illness (such as shouting at unsympathetic doctors and health care bureacrats), they re-evaluate their life and become a better person. It's very uplifting and leaves the audience satisified. Except the hero rarely ever loses their good looks, much less their hair, or suffers skin rashes, or debilitating and embarassing breakdowns of bodily functions. That would be too much of a downer. Why would people watch that?

The documentary A Lion in the House follows the stories of several children undergoing cancer treatment at the Cincinnati Children's Hospital Medical Center. The filmmakers were granted extraordinarily intimate access in the conversations between the kids, their parents, doctors and nurses. Some of the kids barely understand what's happening to them. They hurt all over and wonder why their parents can't do anything. The parents are by turns heroic, smart, worried, enraged, delusional. The doctors and especially the nurses are brusque and compassionate, arrogant and practical, stoic and humbled. In other words, everybody is a human being.

Jean and I watched these programs. We recognized so much of our own experience. Probing doctors and patient nurses. Being woken every couple of hours for checkups. Pain. Tedium. Confusion. No definitive answers. Anxious waiting, and waiting, and waiting...

A fun night of TV viewing, no? It's actually quite gripping and moving. Real life is infinitely more interesting and bracing than tired melodrama. We all need a splash of cold, clean water to wake us up and remind us, "This is what really happens."

I'm riding in the Pan Mass Challenge, which raises money for cancer research at the Dana Farber Institute, particularly for research in childhood cancers. I wish they were doing more research on Jean's appendiceal cancer, and that's one of the reasons why I'm riding. Watching A Lion in the House reminds me of many other reasons.

A Lion in the House is now showing on local PBS stations. To find out more information, visit the program's website at http://www.pbs.org/independentlens/lioninthehouse/index.htm.

Bleaery-Eyed But Happy

Not much to say here that isn't said over there on the left side. The waiting is mostly pretty easy for me. And we're fortunate to be in the Longwood Medical Area, home to more medical professionals on earth than even prime time TV can throw at you. (Jean's a big fan of E.R. and Gray's Anatomy, for some morbid reason.) I'll try to provide more observations in the future. And I'll try to make them interesting. Meanwhile... yawn...

Another Day of Normal

Jean is back at Mt. Auburn. She had nausea and de-hydration yesterday, signs of a stomach flu, probably. Given her medical history, her doctors didn't want to take any chances and admitted her overnight. She was feeling better after they hooked her to an IV that gave her the fluids she needed. She'll be discharged today, tonight, or if they're feeling very cautious, tomorrow.

With the complications that Jean's had from multiple surgeries, radition, chemotherapy, Erbitux treatments, and of course her upcoming kidney surgery, none of her doctors are taking anything for granted. They're looking at possibilities of partial bowel blockage (nothing too serious), hydronephrosis of the kidney (maybe infection of some sort), and anything else within reason.

Frequent flyer membership at Mt. Auburn has its privileges. Jean's on her usual floor, with a nice view of the city and the Charles River outside her window. Actually, getting the room has more to do with being a patient of Dr. Nauta than our frequency of visits. Most of the nurses recognized us. We knew her first shift nurse, Susan, by name and she remembered Jean's case.

Even the residents are familiar faces. Dr. Steigman, one of Dr. Nauta's staff, ushered Jean through two of her previous stays. Talking with him was like shooting the breeze with friends. "We'll do, you know, the usual." When the residents gathered around her bed last night, our conversation could've been at a bar down the street.

Head Resident: "She shouldn't get food tonight. Just fluids."

Me: "What if we say, 'Pretty Please'?"

Head: "Hmmm, yeah. I'm gonna say, ah, no."

Looking over the residents, I said to Jean, "Remind me to tape 'Scrubs' tonight." They got a laugh out of this. One of them asked me, "So which one of us is Dr. Dorian and which is Dr. Cox?"

Jean and I watched 'Scrubs' before I went home for the night. One of the characters on the show said, "I like Grey's Anatomy. It's as if they took our lives and just put it on TV." Indeed.