Month: November 2011

Decline

Wednesday, Nov. 16

He was never the same again.

The end of Chapter 1 of the story of a man’s decline.

There are peaks and valleys yet for me, but I fear I may never return to late summer’s heights of adventure. I’ve been in the grip of a dogged cough for nearly three weeks now, and the islands of Casco Bay are guarded by a deep blue chill. I did go snorkeling yesterday at East End Beach, if only to prove it’s too cold for a 7mm wetsuit.

Today was the last of five days of Temodar, and again it feels like poison. I’m terribly constipated, out of tune, hot and cold, dull, disinterested. I have a mild but persistent headache. Is my tumor coming back? If next month’s MRI shows progression, I might never taste the sea again.

I struggle with the question of how to decline and die. I study my death. I will sleep, and sleep, and sleep, more and more and more until I stop waking up. Death rattle. Done. In a way, it’s a gentle, easy cancer death. ([10. Symptom Time Line from BrainHospice.com])

But I’m still scared, and sob some. I realize I will never succeed in raising my son. I’ll never pour enough love into his 7-year-old heart. I have to let that go. ([15. As a matter of principle, I’m not giving up on the possibility, however remote, that I will live to see him reach adulthood. But it’s very unlikely.])

Thursday, Nov. 17

Today I wanted to die. Something inside me was moaning and shivering and rattling chains like a Jacob Marley.

I stumbled through a NyQuil hangover to a morning appointment with a neuropsychologist. I didn’t know what to expect and didn’t bother wondering. We talked about my illness and my depression. On a scale of one to 10, with 10 being “very happy”, I rated myself a two.

Two? That surprised me.

She graded my memory, spatial and verbal skills with fairly simple tests. The math test proved tedious and I didn’t finish it in time. It’s only a “baseline” test, anyway, if ever I want to gauge how far I’ve fallen from here.

Friday, Nov. 18

I’m not feeling well. Repeat 1,000 times.

Shall I meet with death? Let’s do it, I say. But this is not courage. Make peace first, and that is not lightly done.

Mine is not a soldier’s courage in the face of gruesome risk. It is the courage to face a slow decline. It is the courage to embrace a truncated life. ([20. Courage])

And to whom do I owe this? Is there a purer person behind my depression, ready to embrace this slumping soul and guide it to nobler conceits?

Make peace.

Saturday, Nov. 19

It’s amazing what a few good shits will do for morale. I’ve returned, upright, to my full-time job of being a cancer patient, not so desperate nor nearly healed.

As the late art critic and glioma sufferer Tom Lubbock wrote:

It’s not possible to get any distance from my project: being alive. Objectively, from the outside you might say, my life is terrible, unbelievable. And it’s true, I hate this. I hate the way I am at the moment. But there is no objective view, I am here, in it, and there is nothing else, and this fact brings with it many things that make it of course easier. And beyond that there are many other things to think about. ([30. Tom Lubbock: a memoir of living with a brain tumour from The Guardian])

NOTES:

David Hallowell

It’s easy to forget that we’re not just customers of our doctors. We are also the substance of their lessons and discoveries. Yet even in the course of demonstrating a medical triumph with our own bodies, some do sacrifice: members of the control group in clinical trials, like David Hallowell of Belgrade. ([10. Of course, we don’t know ahead of time that the treatment group will fare better than the control group. The treatment itself may prove detrimental (e.g. toxic) or have no significant benefit. Thus the critical role of the control group in assessing efficacy.])

David’s gliosarcoma was diagnosed in November, 2010. Soon after, he joined a clinical trial of the chemotherapy drug Avastin. Only months before my own tumor was discovered, his participation helped prove that Avastin safely fights brain tumors. Unfortunately, that proof was delivered with the control group’s ill fortune in comparison to those who received the drug. David’s tumor recurred and he needed a second surgery in the spring before finally starting Avastin treatments.

As a result of studies like his, oncologists began to use Avastin earlier in the process of the disease. I was able to start treatments within two months of my diagnosis.

I never met David, but we shared an oncologist. David’s wife Judy contacted me in June after reading this blog. I emailed her this morning to catch up, and she replied with news of David’s passing in August at the age of 56.

She wrote: “In my heart I do think if he had received the Avastin with his standard treatment right off instead of the placebo he would be here with me today fighting the fight. David had said he just hoped that all his clinical studies would help someone else.”

It’s a brutal and tenacious type of cancer. The common treatments — surgery, radiation, Temodar — add only months to the average prognosis. But until there’s a breakthrough, those months are what we’re living for, or living in, right now. Perhaps early Avastin treatments will add a few more months to my own life, for which I have David and many like him to thank. May I earn the chance to do the same for others, if fate so grants.

David’s obituary in the Kennebec Journal prescribes this opportunity beautifully: “In honor of David’s memory, I ask folks to pay it forward with a random act of kindness, smile up to the heavens with a wink and say, ‘This one’s for you, David.'” ([20. Originally published in the Aug. 18, 2011 edition of the Kennebec Journal, and accessed online Nov. 10, 2011.])

Rest In Peace
David Lee Hallowell
May 11, 1955 – Aug. 17, 2011

NOTES: