My friend Loene Trubkin has been battling cancer for years, amazing her friends with her good spirits. Then, several months ago -- perhaps encouraged by her writing class -- Loene unleashed her anger in a remarkable poem titled "Karma." I was so impressed, I asked Loene if I could post it on my blog, and she agreed.
Knowing that she and a mutual friend of ours -- Hugh Yarrington -- had exchanged many emails about their personal struggles with the disease, I asked Hugh to write an introduction to Loene's poem. Hugh's intro and Loene's poem are here: http://bit.ly/JxucJp.
Our friend Hugh died last Tuesday morning. I asked Loene if she'd write a remembrance. Again, she agreed.
After working together in the 1980s and early 90s, Hugh and I lost touch. Fifteen months ago, he contacted me. He had just been diagnosed with a high-risk form of multiple myeloma, a cancer of the blood plasma. He was reaching out for information and support, and he knew I had been in treatment for several years. Over the next months, we exchanged dozens of emails.
I have known many cancer patients, most of them courageous fighters, resilient in the face of unpleasant news and worse side-effects. But Hugh was sui generis. He couldn’t help being fascinated by and studying the science even as he was suffering the torment, to a budding chef, of all food tasting like “Adriamycin mush.” He loved the steroids that most patients hate, because they gave him wide-awake nights to read math and physics. As soon as a chemo round finished, he was outside, walking, slowly at first, to regain his strength while plotting the day he could return to the golf course, carrying his own clubs. Even though he knew his outlook was grim, he decided his attitude would be to “piss on this disease,” even if it meant he was “just ginning up as much courage as I can because I’m scared.”
Hugh’s original treatment plan was for three months of chemo and then many months of recovery after a potentially life-threatening bone marrow transplant. For the first time but not the last, he railed at the impact of this unwanted disease on his nice life before finding humor in the situation and then accepting that the old life was gone, at least for awhile. After talking with his doctor in September 2011 about what to expect, Hugh wrote, “All in all, he thinks I'll be ready to resume living by June! Yeah, that's what I said, ‘JUNE 2012, you are fucking kidding me!’ ’Well, it's almost funny. I feel great, do everything I want, am never sick, have a great life ... why would I spend the next 9 months letting this guy try to kill me. So, I ask him, how much good time will all this fun gain ..... maybe a year or two, he says. Then, if we're lucky, we'll do it all again. So, I ask the obvious question: look, I feel great, suppose I just don't do anything? Good luck being here for your next birthday, he says. Geez! So, well, I guess I start the chemo pretty soon.”
And so Hugh embarked on an often difficult journey. Treatment after treatment failed to drive down the “kappa free light chains,” which would show he was gaining on the disease. Much of the time he felt well enough to walk and play with his children and visit with friends, but then along came nausea and fatigue, fevers and leg cramps, blood clots, a fainting fall caused by dehydration, food that tasted like sawdust, and a port that kinked up and had to be replaced. And even as he agreed to each new treatment, there was no effect on the kappas, or not enough. The transplant was called off, and Hugh began looking at clinical trials. The one he chose, one that promised to re-infuse his white cells after pumping them up into cancer-killers, killed him instead, although not soon enough for him to avoid the resulting kidney damage and brain bleed.
Hugh started his journey “full of hope and fight.” He thought the mental challenges were more formidable than the physical. “I can, and will, fight hard to stay alive, even when alive means a good deal less than it does today. Still, it is difficult for a person like me, never even thinking of mortality, to rather suddenly be in a place where I must think about it a lot. I don't feel sorry for myself or even really bad about it. I just am not so good at it yet. I don't really know how to think about it. When I do, it still sort of seems academic and not really me.
“I also can see that my entire life and my intellectual approach to it has been rather foolishly founded on the idea or feeling or sense that I would always be lucky, that my good fortune was ensured somehow. I am sure this helped me often in life. Now, well, now . . . . it is another thing entirely. I can't read any happy endings anywhere. The literature is decidedly against Hugh's luck stepping in and sorting out the mess my body is in. Oh, my, I'm sorry. I do sound pitiful, don't I. Well, rest assured. I don't feel pitiful, or even very sad. I just am a bit stunned and, even, bemused. It is a strange and, well, not all bad feeling.” And so he talked himself back into a positive outlook over and over. “Every day you get past, you are winning. I try hard to remember that. It may get you, ok it will get us both someday, but not today, not today!” He was going to live in the present, remaining “hopeful, cheerful, and tough.” He knew he would be downhearted sometimes: “not defeated, not giving up, just down and feeling a little hopeless because it will not relent, not let us up, not just go away.”
Hugh had in his back pocket a membership in Dignitas, the Swiss assisted suicide center, in case he should finally say “enough.” “I won’t do what my mother did . . . spend three years in bed wasting away to nothing and unable to do anything at all but suffer.
“I suppose when the disease runs over us like a truck, and we can feel the fight go out of us, then we will know that, at least for us, it is over. I suppose that this comes at a bad time, but also, perhaps, as a relief. Sometimes, there is an acceptable release in giving something up when all hope is gone, especially when you’ve done your best and fought as hard as you could.” Still, he had great hope for new technology and targeted therapies and the ascendance of science over cancer. “Probably too late for me, but maybe not.”
As 2011 was ending, he wrote, “I wonder how I would be if I'd never had this disease . . . different. I don't know that I've fully accepted that it is me as yet. You know, there is the old me, the me I know every inch of and can predict with great accuracy. Then, there is the new, sick me. I don't really know him, and I am just now trying to sort out how he reacts to things, how he deals with things, what he thinks about things. It's a bit weird being two people. At some point, I am sure the old me will give over and realize he has no place anymore.” A few days later, as the new year dawned, he wrote, “Who knows what 2012 will bring for us, but we do still have the will and power to face it like grown-ups and deal with it with as much spine as we can muster. I know we can both make it a good year . . . day-by-day . . . if we do that. And no one can ask any more of us than that.”
In the spring, after his first round of the “red devil” chemo, Adriamycin, Hugh wrote that “being weak has always been a dread disease for me, always! Now, well, I am weakening. It is hard to let it show and even harder to talk about and say how it feels, really feels.” He crawled through the second Adriamycin round and a month later was once again feeling good enough to play golf, gaining back lost weight. And yet the myeloma was not responding. “It is funny, but increasingly this disease has given me a very interesting peace of mind, a detachment. I am at peace, with a feeling of amused, tolerant, irony toward the world and my own situation in particular. It isn't that I don't give a shit or that I'm not fighting. I'm fighting . . . but it is one of those fights you laugh your way through. It's hard to explain, I knock him down then he knocks me down . . . but the upshot is that I am fine, even better than fine . . . I seem to have arrived at a place where I am relaxed and taking everything as it comes . . . even expecting most of it. We both know how changeable our moods can be in our circumstances, but this seems to have been building in me so that now it feels fairly comfortable and permanent.”
He thought the most important element in gaining peace of mind was “humor and the strong sense of our utter insignificance in the grand scheme of things. Of course, laughing at that is not always so easy, but, really, when one thinks about how seriously we take ourselves and our little lives ... and why, for what? Better to be amused by the silliness of it all. And, perhaps, to have some respect for understanding that it is all a dream anyway.”
He marveled at the human spirit. “We can all give up any time we want, but, mostly, we don't. The trouble with this disease, as opposed to those things that just go ahead and kill you, is that you get all this time to fight and suffer and think about it. I guess it is good . . . I mean it is useful to have this extended wrestling match with mortality and what it means. Philosophically, one does get a lovely chance to think it all through, yet again and under the gun, so to speak. Still, I do sometimes think how lovely a massive cerebral hemorrhage might have been . . . as long as I didn't have to have it right now!”
In June, after three rounds of a different and similarly ineffective chemo, he wrote, “Almost a year after non-stop chemo, I am still okay, but I am definitely not as strong and often feeling like shit. I wonder how I'd feel if I'd said ‘I'm not doing it. I'll wait for some symptoms to show up and give me a reason to do it.’ Well, I've been through all this over and over and decided to go on with the treatment. It's just that as time goes on and no progress is made, except to beat down my overall good health and sense of well being, one has to wonder.” But then Hugh got permission to postpone the next chemo round so that he could visit old friends and attend a wedding in DC. While there, he visited NIH and learned about an immunology trial which he’d be the first person with myeloma to try but which had been successful for leukemia patients with the same genetic problem Hugh had. In August, a month and a half away from chemo, he was walking four miles and running (well, trotting) a mile a day. He was pushing the contractor to finish his house and was optimistic about the trial and hoping he would qualify.
He admitted to not thinking about the “how and when to die question” except in a “a deeply abstract way. In that mode, I will know when it is time and I will die my own way, under my own steam, at the exact time and place of my choosing. It is a comforting thought just now, but my more critically thinking self knows that this is a mental game I control now, but may not control later when it matters.”
Hugh’s fears of lingering helplessly didn’t eventuate. His last email to me, on October 26, showed him still fighting to regain his appetite and restore kidney function. The real reason for his last communication was a request to call a mutual friend who I didn’t know was also suffering from the side-effects of cancer treatment. Hugh died on November 20. I will miss him, as will so many people whose lives he touched with grace and humor and amazing intelligence.
If you have thoughts about Loene's piece -- or Hugh's musings about his cancer -- I'd love to hear them. Please feel free to add your comments below.