Howard's Butt

Still cancer-free! Three year cancerversary

Wed, 06 Mar 2013 18:19:24 -0800

Thank you again to my caregivers and all the people who supported me, including many who commented here. I’ve been scanned, scoped, and probed and I am pronounced cancer free again. Three years is a significant anniversary — my oncologist hasn’t seen a recurrence of my disease after three years. I go for annual instead of semi-annual checkups for two years, and then, in 2015, I’ll be free of further scanning, scoping, and probing.

Farewell, Michelle Conte, valiant warrior

Thu, 11 Nov 2010 17:54:00 -0800

I’m healthy. Still cancer-free after being probed and scanned and tested. Next round of tests is in January.

I want to write about someone else. I lost a friend to cancer today. She was the mother of my daughter’s high-school boyfriend. Her name was Michelle Conte, and she chose to stand and fight for her life in a way that I frankly would probably not choose to. But I salute her valor. There is no other word for Michelle but “valiant.” She was vivacious in the true sense of the word. She loved life, every precious second of it, and fought for it with determination and courage. She chose to take much more medical punishment than I ever did in my more fortunate encounter with this terrifying disease. The last time I saw Michelle alive was in the chemotherapy room at the local cancer center, early last year. It’s not a place where I wanted to run into old friends — for their sake as well as mine. I underwent two weeks of chemo, with a week’s break in between. It was by no means comfortable, but Michelle literally underwent years of chemo - much stronger chemicals than I was given. She never gave up. It wasn’t in her nature. Here is Michelle, talking about her experience, a year ago, at her temple during high holy days.

That’s not what I remember when I think of Michelle, though. I remember the summer after high school graduation, when she and her son joined my daughter and I for a week hiking in the high sierra. We had arrived at our magnificent camp on the shore of a pristine lake. The water was icy, but we all bathed daily. When Michelle returned to camp from her first bath, she asked my daughter, with a very serious look on her face, whether she (my daughter) had brought any hair conditioner. She had not. I saw from her facial expression that Michelle was struggling with some kind of serious loss. Hair conditioner doesn’t mean much to me, but it was clearly important to Michelle. For about a second, her face displayed dismay. And then it was as if I could read her thoughts by looking at her face, which plainly said: “I’m not happy about a week without hair conditioner, but that’s my situation and I accept it. I’m in a beautiful place and I’m not going to let the lack of hair conditioner ruin my experience.” I’ve never forgotten those few seconds, looking at Michelle’s face reflecting her thought process. It might seem like a little thing, but to me it was like what poker players call a “tell” — it told me that she had a powerful will to influence her own experience as far as possible. She refused to attach herself to a minor setback.

I’ve carried that lesson with me for years. Michelle. I salute you and thank you for that. Adieu, my friend. I shed a tear for you today.

My butt in Time Magazine

Thu, 20 May 2010 14:35:21 -0700

Old friend Steven Johnson mentions this blog in his article “in praise of oversharing” in Time magazine.

Oversharing, in a strange way, turns out to be a civic good. This concept also dates back to the early days of the electronic commons; Rheingold’s 1993 book The Virtual Community told the story of a member of the pioneering online community, The Well, posting about an ultimately fatal battle with cancer. But The Well was a small community compared to the vast expanse of the Web, and those conversations unfolded in a space uncrawled by Google’s spiders. The shared experience and wisdom that comes from living in public can now reach a much bigger audience — most of them complete strangers, dropping into the conversation from a search query.

Of course, the cancer element endows a certain nobility to all the talk about Jarvis’s penis and Howard’s butt

Return to (the illusion of) the future

Fri, 14 May 2010 19:55:00 -0700

I got the news today that yesterday’s CT scan was clear. Besides making me happy, the news caused my mental model of the future to stop wobbling. Before I began watching my thoughts fly by on a regular basis, I had never devoted much attention to the question of how much time I spend thinking about the future. When I started practicing mindfulness meditation, my procedure was to count my breaths and observe how my thoughts arise without any apparent effort on my part. I recognized the nature of the thought that was drawing my attention away from my breath — “remembering,” “associating,” “fantasizing,” “planning.” It might be different for others, but for me, “planning” comes up a lot whenever I do that exercise. It had never occurred to me before my cancer diagnosis that events could cause my mind-picture of the future to wobble like a mirage in the desert, or to disappear entirely.

Practically the first thought that occurred to me when I read that e-mail in that Paris hotel room last January was that the cone of possibilities that I had always pictured spreading out indefinitely into an increasingly fuzzy future could be truncated quite suddenly. It became possible to feel what it’s like to suspect that the future might consist of a few months, or weeks. I could see the end of what had been an infinite tunnel. I knew there was an end to it somewhere, but that was always off in the distance. Suddenly, I could see with telescopic vision. It wasn’t a distance any longer. It was a proximity.

Since then, I’ve lived in two alternate realities at once. In one reality, I keep a calendar and make entries in it for months in advance. In another reality, the calendar doesn’t go that far for me. My sense of the future had changed. I could still plan for it, but could no longer muster the power of certainty. During treatment, I didn’t really want to think about what the next week would feel like, but I did keep in mind the image of a Spring when I was no longer putting my body in the path of a linear accelerator in the morning, shitting fire in the afternoon, and lying stupified and weak until the next morning. Spring came, I started to recover from treatment. The smell of jasmine and roses, the feel of the lawn beneath my feet. I’ve never been so glad to see another Spring. I went through withdrawal from the painkillers I had been taking every four hours for the past four months. But when I stopped taking painkillers, my abdomen started hurting again. Haven’t I been through this before? One thing I’ve learned is to resist denial and call the doctor immediately when I realize I’m going to have to call him eventually.

The pain was nothing like it was in December. But it was insistent enough. Like a dog barking in the distance. It’s not really that bothersome until it goes on hour after hour. At this point, barely two months after chemo and radio, it seemed unlikely that the pain could be caused by the tumor regrowing so fast that it was pressing on a nerve again. My oncologist ordered a CT scan to make sure. My image of the future started shimmering again, even though I’m now in full-blown planning mode for my next book. If the pain isn’t crippling, you have to keep up the work of living your life as if it had a future, even though it becomes impossible to maintain the illusion of certainty. I no longer say “I’m going to New York next month,” which isn’t exactly true. I say “I’m planning to go to New York next month.” I didn’t have to get cancer to start seeing things that way, but that’s how it happened to me.

As I said at the beginning of this post, I got the news today that the scan was clear. It’s probably damage from the radiation that hasn’t recovered yet. Two months after being run over by a bus, human bodies still need time to heal. So it’s back to pain killers. I’m planning to go to Peru for a few days. I’ll bring my pain killers. My acupuncturist is working on me with the little needles and is recommending a massage therapist. I’ve started doing yoga and qi gong again. And planning. Working on my syllabus for September, 2010. Making elaborate outlines for chapters I plan to write between now and July, 2011.

I guess the next question is whether “planning” will occur to me less often when I watch what my thoughts are doing.

Pain, discomfort, and happiness

Tue, 13 Apr 2010 18:06:00 -0700

Just a brief observation, because this is a liminal period and my current state of mind will probably change — another message in a bottle to my future self.

I’m happy. What fool WOULDN’T be happy to be cancer-free?

At the same time, my wound hurts if I don’t take painkillers, and I go through what I imagine to be withdrawal symptoms (irritability, fatigue, cold sweats) if I don’t take painkillers. My energy is still low. I have a urinary tract infection. So I am simultaneously in pain (NOTHING compared to the pain I experienced before my diagnosis and in the 5th and 6th weeks of treatment) AND happy.

I’m told that the word “dukkha” that is part of the Buddhist vocabulary is mistranslated as “suffering,” but is closer to “dissatisfaction.” I’m in pain, but I’m not suffering. The same pain, day before yesterday, before I learned that the tumor has been killed, would have been accompanied by near-depression.

My good friend Richard Nielsen, long-time managing editor of the Co-Evolution Quarterly and Whole Earth Review, who taught me how to edit prose and prune fruit trees, died of AIDS. His last months were protracted. He had zero money and lived in poverty. He had a lot of pain. I talked to him a couple days before he died. I told him that I heard he had been having a rough time. I’ll never forget what he said. I’m beginning to understand it better. He said: “Yes, it’s been rough. And I’m grateful for every minute of it.”

So am I. So am I.

CANCER FREE!

Mon, 12 Apr 2010 12:51:54 -0700

I just got back from my radiation oncologist. He used what he claims to be the most sensitive scientific instrument he has available — his finger — to determine that the tumor is completely gone. Dead. Kaput. He wants me to get a sigmoidoscopy in six weeks and a PET scan in three months, and he’ll want to examine me every three months for the next couple years. But right now, I am officially cancer-free. Chance of recurrence is highest in the first 2-3 years. If it does not recur in 3 years, I’m considered cured.

It hasn’t entirely sunk in yet. But it does seem that the lights have been switched on in the part of my mind labelled “future.” I still feel cracked-open and heart-peeled, but the fear and anxiety are gone and I’m open to joy and simply enjoying the miracle of being alive and present in this wonderful world. Maybe the openness will begin to become enclosed by the quotidien details of everyday life. Maybe I will be able to use this opening to become a more compassionate human.

It will take me another 90 days to get back to 90% of my energy level, and up to a year to get back to 100%.

Thank you so much. I love you.

Yay!

Feeling like a peeled hard-boiled egg

Sat, 10 Apr 2010 14:51:00 -0700

Reading my first entries here, I’m impressed with my bravery. I just strode into the teeth of the storm, didn’t I? If I was to talk that way right now, it would be bravado. My armor is cracked open and my heart is raw and sensitive. I’m open to compassion for those who suffer far worse than I have. I’m open to a kind of deep love I’ve never known before, for my caregivers. I’m open to love and gratitude to my Judy and to all those who have supported me in so many ways and so many places. And I’m open to fear and anxiety, doubt and weepy sentimentality. I feel like a hard-boiled egg with my shell peeled away and only that thin membrane remaining between my feelings and the world. I’m trying to embrace this new condition. I didn’t ask for it, but neither did I ask to be born. But strong forces within me want to, perhaps need to, re-armor.

Part of who I am, part of what has enabled me to survive my circumstances with my independence intact and my mind fairly open, was the armor that I grew out of necessity, growing up in Phoenix, Arizona in the 1950s, a bookish weirdo Jewboy who didn’t play basketball. There’s no need to get into all that. I understand the sad consequences of the way young males in America socialize each other. But it’s no wonder that I have sometimes characterized myself as a martian — at one point, even dressing up like a person from another planet and pretending to be an alien anthropologist. Even among public intellectuals, I’m from left field. Academics allow me to dwell among them, but only temporarily and provisionally. I do see clearly now how the person I’ve become was largely a creation of my own choices; I could have reacted in other ways, become other people, but I did what I did and I am who I am. That’s not the end of it. Apparently I’ve been called to be someone else. Again.

One of the benefits of aging is a growing understanding of why I did the things I did when I was younger, and why I don’t necessarily have to continue doing things that way. I know that Judaeo-Christian and Buddhist and Muslim-Sufi traditions consider the painfully cracked-open heart to be a desirable state. So I’m trying to treat my raw nerves as “the new normal,” and considering the possibility of learning from it. But it hurts, and it’s a kind of pain that I can alleviate by rebuilding the carapace that used to protect me.

I don’t know that I need to communicate this to anyone but myself. I enter it here in case a later me has need of tracing the path I’ve taken since that night in a hotel room in Paris when I crossed the line into a world where everything is different. And I do it publicly, I suppose, as a self-initiation into the new person I’m becoming. Self-construction of identity is a challenge to the world to treat one in a certain way, I suppose.

My life forks on Monday. But doesn’t it fork every day, in every moment? I guess it’s only rare to be so aware of it.

I'm back in action!

Fri, 09 Apr 2010 14:32:25 -0700

Portland went well. I still need more rest than I used to, but I feel like this was a milestone. I was on stage for nearly two hours, and a dinner with sponsors and additional Q&A afterward. Monday is a big checkup. THE big checkup.

Buoyed by support

Sun, 04 Apr 2010 13:14:56 -0700

I’m feeling better, now, although I still have a distance to go, physically and emotionally. I realized that readers of this blog and its comments are only seeing a small part of the tremendous support I’ve received. I get emails every day from friends, students, colleagues, strangers. People send me music, flowers, bring food. Thank you, thank you! The prayers, good wishes, messages really mean so much. I’ve said it before but it’s worth saying again: I’m still agnostic, but I now believe in prayer. Knowing that so many people are holding me in their hearts, in the light, lifts me up on a warm cloud — above the pain, fear, anxiety, melancholy. Thank you, my friends. Thank you.

Depression?

Thu, 01 Apr 2010 14:53:12 -0700

I’ve been sleeping a lot. I get out of bed around 8, breakfast and do correspondence for a couple hours, and I’m back in bed by 10:30 or 11:00. I get up for a couple hours around noon and then sleep again until 4 or 5. In the last few days, I’ve been experiencing anxiety and sadness. There are real reasons for anxiety — cancer, financial worries, career worries — but I am not ordinarily a weepy person. Judy, who has to be the best Internet researcher I’ve ever met, turned me onto this, which pretty much describes how I feel. So I’ve identified it as depression, but of course that doesn’t solve the problem. I know from experience with my mother — the last person on earth I would have ever expected to suffer from depression…until she did — that it takes weeks for anti-depressant medication to take effect. And I fear the effects on my thinking capacities. All I have to work with is my mind. I’m going to try to get some exercise, take the puppies out, spend a little time in the garden.

Back on the planet, but....slowly recovering

Thu, 25 Mar 2010 11:22:34 -0700

Just to let you know that I am indeed on the mend. However, I’m still very much in recovery mode. I need to spend most of the day napping. Whenever I think I’m back to normal, I overdo it and get slammed the next day. I’m still thinking/hoping that I will be able to stand up on a stage and give a keynote speech in Portland, OR, two weeks from today. I’m barely two weeks past my last treatment, and if I get better at this rate, I ought to be OK. It’s frustrating to not be able to work, to garden, to walk my dogs. I need to remind myself that taking care of myself is my full time job now. I continue to receive wonderful messages of support, music mixes, food, cards and letters, from the communities I belong to around the world. I continue to be buoyed by that support.

I hope to check in here on the eve of my departure for Portland to tell y’all that I’m not only back on Earth, but back among the fully functional.

Return to Planet Earth

Mon, 15 Mar 2010 08:49:14 -0700

Henry James at Stanford

Thu, 11 Mar 2010 07:54:00 -0800

Henry James’ book, Portrait of a Lady, involves a young American woman in Europe and two European nobles who manipulate her. Through much of the novel, neither the Lady in question nor the reader knows about this manipulation. At some point, however, at a social gathering, the two manipulators exchange a glance across a crowded room — and all becomes clear for the reader, and ultimately, for the Lady. Who hasn’t experienced a moment when a new acquaintance or lifelong friend has not revealed something good or bad about their character in a single glance, gesture or action?

So I made it to class! Usually, I am the first to arrive, and the students drift in. Yesterday, I was a few minutes late and everyone was set up to go. When I opened the door and they looked at me, I could tell they were startled. I bet they assumed I wasn’t going to make it. They applauded, which pleased me. They provided two chairs for Judy and I at the back of the room — I need to be close to the exit just in case. I was also hydrating like crazy because I’ve been running a fever and taking antibiotics since Sunday.

During a break, one of the students who had been in amateur theatrical productions at the high school where Judy is the costumer, came over and gave Judy a hug. It made her feel welcome in a room full of people who certainly knew who she was but had not expected to see her. During the next presentation, a student who was running the video camera noticed that I had run low on water. He quietly retrieved my water glass and filled it.

Both those students revealed a degree of compassion and simple awareness of others. In one sense it was like being in a room of mostly sleeping people (I choose not to dwell on the vast majority of the students who failed to come over to introduce themselves to Judy) and noticing that two were, indeed, awake.

Palo Alto Bound

Tue, 09 Mar 2010 12:45:55 -0800

I’m going for it.

Graduation Day

Mon, 08 Mar 2010 15:46:00 -0800

It’s been another rough week. Last night, Judy and I spent 9 PM - 4 AM in the Marin General ER because I’ve been spiking mini-fevers above 100.5, which is apparently some kind of threshold. They took blood for cultures to find the cause of the infection, pumped me full of IV antibiotics, and sent me home with oral antibiotics. My white and red blood cells are scary low because the chemo worked, killing off fast-growing cells anywhere in my body. Which means I’m temporarily immunosuppressed. I’ll wear a mask tomorrow and refrain from shaking hands. The medication regime has become complicated. I need to take pain meds every three hours and antibiotics every eight hours, and the anti-diahrreal meds when I just can’t stand the run, scream, squirt routine any more. I can’t eat dairy too soon before or after taking the antibiotics. I take my temperature and chart it. Cancer has become something of a full-time job. I plan to retire from the Cancer biz soon.

Every day, I have a small amount of energy and mental clarity. I’ve been trying to keep up with and comment on student blog posts. Tomorrow is the last meeting of the Stanford Digital Journalism Class, and the students will be presenting their projects in McClatchy Hall’s very nice Mendenhall Library. The students will appreciate the refreshments that the ever-supportive Communication Department will provide. I’m hoping, hoping, hoping that I can make it. I’ve burned my boats. Once a year, we get a rooter service to clean out the pipe that runs from our toilets to the street sewer line. Judy arranged for the rooters to come out tomorrow. Believe me, even without diahhrea, a broken shitpipe is a mini-apocalypse. We can’t use any toilet or sink for six hours. Which means I’m either heading for Stanford or camping out at Starbucks. (The weird but charming little quasi-community of Tam Valley, where I live, has a number of communions. In the summer, there’s music and BBQ at the community clubhouse off Coyote Creek. And when a storm cuts off broadband access, everybody heads for Starbucks at Tam Junction. You can tell if their Wi-Fi is functioning because half the population of Tam Valley is sitting on the floor with their laptops.)

Today was Graduation Day! The radiologist always DJs for me: Grateful Dead, Django Reinhardt, Willie Nelson play from the speakers while the radiology crew retreats to their control room and makes sure that the particle accelerator is zapping the cells we want it to zap. Today he played Pomp and Circumstance. And I got a little diploma, signed with a personal message from every caregiver I’ve interacted with at the Marin Cancer Institute.

I’ll be back in a month for my first checkup. I’ll bring more books for gifts when i return April. Apparently the husband of my wonderful radiology nurse had previously known about my work and sequestered the copies of The Virtual Community and Smart Mobs that I had left for them. I also passed around a few copies of They Have a Word For It.

When my first crop of plums start plopping down onto the lawn in May, I’ll bring them a bushel.

I’m told that the painful side effects will dissipate and my energies will begin to flow normally, starting in about a week, and continuing for weeks after that. Considering that the weeks after that coincide with the sweet infancy of Spring, I’ll be able to lie down on the spot where I wrote most of my books and retrieve some of the energies I must have stored there.

As I feel better, I’ll let y’all know. The presence and generosity of the community who have assembled around this little blog are every bit as important as the particle accelerator in the healing process.

My first check-up is scheduled for mid-April. I’ll keep this blog open until I can post the news.

I love you madly.

The New Normal Achieves New Lows

Mon, 01 Mar 2010 18:32:07 -0800

Beloved friends. I am not appealing for more sympathy — I feel buoyed, supported, and uplifted by your love. But I do need to let you know that I’m in the thick of it. What that means is that my fervent hopes to attend class in person tomorrow have been dashed, and that it is likely that it will be some time before I can post anything more substantial here.

My Judy continues to be my hero.

The New Normal?

Wed, 24 Feb 2010 16:02:31 -0800

When all this started, one of Judy’s wise remarks was “Maybe this is the new normal.” After all, everything changes — why shouldn’t “normal life” change?

Doctors keep warning me about the onerous side-effects of treatment, and while I wouldn’t recommend going through what I’m going through, diet and medication and meditation seem to be helping me a great deal. On my doctor’s advice, I didn’t attend my usual Stanford class on Tuesday, but participated remotely via videoskype and Twitter. My student co-teaching teams and substitute ringleader did a great job, and I was able to maintain some presence.

Nevertheless, I’m making plans to attend the last two classes of the quarter, next Tuesday and the Tuesday after that.

As it has been explained to me, as the tumor sloughs off, it leaves behind a wound, and that wound will be increasingly painful. I’m moving to a more powerful painkiller, and P+T gave me a great meditation that has helped me to teach my body to not clench around the pain like a fist. I’m sure that many people deal with much much greater pain than this. I’m pretty sure I can do it. I know that I have to try. I have no way of knowing whether my students appreciate how important it is to me to be present for them in every way possible, but I know that for my own personal and professional dedication, it’s important for me to try.

Maybe the doctors are right and I’ll get hit with a world of hurt. Maybe I won’t. Maybe I will but will be able to deal with it well enough to teach one more three-hour class in person and attend the three hour final course session where the students present their magnificent collaborative projects.

Onward!

Avanti!

Mon, 22 Feb 2010 15:26:53 -0800

This is the fifth week of treatment. They warned me and rewarned me that this week and next will be rough. I don’t want to be cocky or dabble in hubris, but although I do have intense episodes of discomfort, so far my side-effects are manageable. I started chemo again today. My platelets and white cells are down, as expected, but not so far that treatment needs to be suspended. The infusion pump — a fanny pack attached to a PICC line that feeds 5-FU continuously to my bloodstream — is an inconvenience, but I can think of greater inconveniences.

I can’t enumerate all the loving acts that have been sent my way. Our refrigerator is full of contributed food. Today, a friend sent me a painting done especially for me — all the way from Australia. My students are helping me through the next two classes — I won’t be able to travel to Palo Alto, but will be present via Twitter and videoskype. Every day, another old friend or ex-student shows up to ferry me to my treatments. My wife and daughter are more than supportive — they bathe me in love and good cheer.

Spring is coming. Avanti!

Surrounded by teachers

Fri, 19 Feb 2010 09:46:19 -0800

I’m surrounded by teachers — friends, others who have undergone treatment for cancer, and magical soul teachers like Bengali poet Rabindrinath Tagore. My good friend Phyllis Florin took this photograph of Mamie and I cheerfully paddling a two-person inflatable kayak into a rapid on the Rogue river some years ago. Phyllis has a wonderful talent for enhancing photos into inspirational objects. If the type isn’t clear to you, the quote from Tagore reads:

Let me not pray to be sheltered from dangers but to be fearless in facing them.

Let me not beg for the stilling of my pain but for the heart to conquer it.

I love my caregivers

Thu, 18 Feb 2010 15:18:00 -0800

When I got my diagnosis, I asked my GP if I ought to be at Sloan-Kettering or MD Anderson — the big, famous cancer hospitals. He told me, considering the three-opinion diagnosis, the rarity of my disease, and unanimity of opinion regarding treatment options, that this would be like importing a Ferrari mechanic to change my tires. He liked the oncologists, and the equipment is state of the art. So off I went to the small cancer center down the street from Marin General hospital. You might or might not notice that I don’t mention names of specific doctors here. That’s not with this is about. But I do want to say that not only am I happy that I have been involved with the Marin Cancer Center, but I also actually love my caregivers - because they care about me, not just care for my disease.

The treatment center is not chaotic. It’s pleasant, in fact. All the oncologists and radiologists and nurses and others are in communication with each other about patients. A couple days ago, my radiation treatment team told me that the nutritionist wanted to speak to me about my weight loss. Every day, a nutritionist or social worker, masseuse or nurse or oncologist wants to talk with me briefly after my treatment.

I brought in postcards of my Balinese Garuda for the people I see the most regularly, the team who operate the particle accelerator that zaps me from carefully computed directions five days a week.

They put one of the postcards up on the door to their control room, along with pictures of their kids. Then they asked for the URL of my website, and today I saw that they had not only printed out my Cosmic Keyhole painting — decades old, originally painted on the decrepit door of the greenhouse that came with our property — but were using it as a screensaver in their control room! How cool is that? I love them!