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It’s time to write the Lonsurf Diary.

To quickly recap, I was signed up for 3 cycles. Cycle 1 started January 11th 2017; cycle 2 on February 11th, and cycle 3 on March 11th. Each cycle lasts 28 days so the final day would have been around April 8th.

Since my bowel and liver surgery in August 2009, I’ve had three previous experiences of Chemotherapy. First was an adjuvant treatment with intravenous Oxaliplatin and oral Capecitabine lasting from Oct 2009 to Mar 2010. Then, there was FOLFIRI plus Cetuximab (both i/v) from Feb to Jun 2014. A drug trial combo of AZD6738 with Carboplatin (again, both i/v) followed one year later, from Feb to Jun 2015.

Each regimen brought different side effects. With Oxaliplatin, it was neuropathy and neutropaenia (low white blood cells). Cetuximab brought an acne-like rash all over my face and torso. Carboplatin and/or the experimental drug also lowered my white blood cells and platelets.

But none of these were really serious, as measured by my ability to do normal things like working, walking, and eating. No constant nausea. No hair loss. No mouth ulcers. No loss of appetite.

For the 2014 and 2015 sessions it was the same pattern. The first CT scan, done around three months in, would show a positive “progression-free” result. The next scan would show the cancer was progressive again and chemo would stop. Scans done after that have continued to show progression as the tumours get larger.

My most recent scan from early April showed the tumor growth had stabilized. When I initially asked for Lonsurf, I calculated a 2% chance of being a “super-achiever”, and around a 20% chance of getting any sort of positive result. As far as I know, I am one of six patients who have recently received Lonsurf at my hospital. I’m the only one with a progression-free result. That supports the statistic and makes me the “lucky one”.

Unfortunately, it also came with lots of tiredness / fatigue, reduced appetite, and nausea / vomiting. Although I managed to stay the course for each of the three cycles, my white blood count was dropping sharply. I ended up in hospital with (yet another) infection, and stayed there for 4 days at the beginning of April. After massive amounts of i/v antibiotics I felt good again. When they discharged me, I told them I had not felt this normal since around October of last year.

So, what to do next? This is the familiar ground of chemotherapy, in which increased progression-free survival is not such a benefit since it comes with toxic side-effects. I made the decision that I would ask for a break from the drug. To use the title of the David Jones first world war poem, I would become In Parenthesis. There will be another CT scan in late June, with results in early July, and we shall see then.

In the meantime, I’ve resumed my cryotherapy sessions back in Thoracic Park. One thing absent from the CT scan results was any mention of tracheal and bronchial lesions. They have done a great job cutting these out or reducing them. This will continue “for as long as I want them to do it”. I do.

It’s a tricky decision on the Lonsurf. After reading the obituary of Robert M. Pirsig, who died recently, I was reminded what he wrote back in 1974:

“The test of the machine is the satisfaction it gives you. There isn’t any other test. If the machine produces tranquility it’s right. If it disturbs you it’s wrong until either the machine or your mind is changed.” (Zen and the Art of Motorcycle Maintenance)

My body is my machine. It didn’t feel right. I need to take pause.

This time last weekend I was at the Cambridge Folk Festival. No-one was more surprised than I that I thought it a wise course of action to stand for hours each day for three days at a festival. When have I ever been sensible?

We took a bus across town to get there on Friday and walked the last few hundred yards past the Cherry Hinton park to the entrance. The summer weather was balmy so by no coincidence it was flying ant day. Swarms of black dots were everywhere on the pavement, like sheet music notes escaped from the Folk Festival and now running wild. Tiny, freedom-seeking crotchets and quavers, let out for the day. A nuptial flight aimed at hitting all the high notes. But it also made the mad swifts scything the air scream all the louder in their feeding crescendo.

I’ve lost count of the number of folk festivals we’ve been to. I haven’t always been impressed with their choice of headliners – often too safe and conservative for my taste. But you always know that each year there’ll be some amazing “starter-out” to be heard in the Club tent and something in the second tent that you would die rather than have missed. A few years back, for example, we heard the Carolina Chocolate Drops and were blown away.

One of the three people in that band is called Rhiannon Giddens, and she was back this year. Playing on the main stage, just before Joan Baez. I’m not going to gush too much (giddy over Giddens?) over how good she was. Just treat yourself to a few minutes on her YouTube page.

She took a picture of her audience at the end:

I can just make myself out, standing about four rows back. This is me, like, on cancer. Having a good time. Zen and the art of cancer maintenance.

The place to improve the world is first in one’s own heart and head and hands, and then work outward from there.

― Robert M. Pirsig (Zen and the Art of Motorcycle Maintenance)

We also discovered last weekend that Gin goes very well with Folk. Very well indeed. Is there nothing that Gin can’t do?

I recall from 2010 Rhiannon mentioned having an an Irishman for a husband, but I just assumed they were living in North Carolina or thereabouts. Turns out she lives in Limerick, has two sons there enrolled in an Irish-speaking school, and speaks well of her Irish mammy-in-law. The clue was maybe when she said pronounce her first name to rhyme with “Shannon” (rather than the Welsh way it’s usually pronounced). Stunning, but the fella she married should have had the decency to move her to Galway. At the very least 😉

Speaking of Ireland, Gin, and Zen puts me in mind of the American poet Theodore Roethke who died in 1963 of a heart attack suffered in a swimming pool. He was only 55. The pool was later filled-in and became a Japanese-inspired zen rock garden. There wasn’t much Zen in Roethke’s mad-drunk life, but he was a wonderful poet. Take this from one of his love poems:

I kiss her moving mouth,
Her swart hilarious skin;
She breaks my breath in half;

Words for the Wind (1962)

In July 1960 he accepted an offer from Richard Murphy, an Irish poet, to visit him on Inishbofin island off the Connemara coast, where they could go sailing in Murphy’s boat. Unfortunately, Roethke liked the bar better than the boat and drank himself into such a manic depressive state he had to be committed to the mental hospital in Ballinasloe. He was driven there by the local priest.

Before he left Dublin for the West he went to see W.B. Yeats’ widow Georgie, in the company of John Montague, another Irish poet. After the visit Montague took him to a pub in Rathmines. As they waited for their first pints of Guinness to settle, Roethke had finished two large whiskeys and was onto his third. Montague asked him why he drank so much. Roethke replied: “I drink like this because I’m afraid of death. It’s all I seem to think about.” He spent a lot of time coming to terms with the inevitability of death.

He wrote of death as “the far field”:

I learned not to fear infinity,
The far field, the windy cliffs of forever,
The dying of time in the white light of tomorrow,
The wheel turning away from itself,
The sprawl of the wave,
The on-coming water.

— The Far Field by Theodore Roethke