Back on the planet, but….slowly recovering

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

Henry James at Stanford

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

I’m going for it.

Graduation Day

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

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?

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!

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

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

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!