Five years hence

My friend Steve Wagner reminded me last week—as if I needed prompting—that I'm coming up on the five-year mark since my cancer diagnosis. I responded archly that I’d be wearing black that day. But then I thought, this occasion shouldn’t pass without comment. Since Steve is a healthcare journalist, I invited him to interview me. What you’ll find below are 11 questions that he prepared and to which I’ve responded. If after reading this post you have a question of your own, please ask it in the comment section and I’ll get back to you.

1.     Aug. 26 will mark five years since you were first diagnosed with melanoma, and in a sense you've beaten the odds for survival that you were given at the time. Looking back, what surprises you most about the journey?

Yes, five-year survival is quite the milestone. When I was first diagnosed (stage 2b), my odds of surviving five years were actually pretty good—about 67%—although I certainly didn’t see it that way at the time. I felt doomed. Then, when my melanoma spread to the lymph nodes two years later, I advanced to stage 3c with a predicted five-year survival of 29%. Now I’m stage 4a and my magic number is 18%. I have to say that this sort of numerical regression is not a big confidence builder.

I’ve read that the concept of five-year survival goes back to the 1930s, when very few people survived cancer of any sort. The five-year rate was introduced back then because doctors considered five-year survival a nearly unattainable goal. So I guess you could say what’s surprised me the most is that I’m still here, since my odds haven’t exactly been improving. I felt much more oppressed about having cancer five years ago than I do now. It’s a little surprising how you can get used to having such an intruder in your life.

2.     When we spoke at the time I sensed that you doubted you would still be around on Aug. 26, 2011. In your mind, why are you still here and what has kept you going?

I could answer that question medically, metaphysically, spiritually or probably half a dozen other ways. In terms of cellular biology, I’m told my melanoma is indolent, which means nothing more than it’s very slow growing. I’ve known people who were diagnosed with melanoma after I was and who have since died. There’s no justice in that, but it’s sort of how things are with some cancers.

Why is my melanoma so lethargic? I have a pet theory, which may be just wishful thinking, that strenuous exercise stimulates the immune system and that this, in turn, keeps my melanoma in check. Perhaps I’ve survived five years because I’ve kept myself in shape, avoided stress and gotten a lot of sleep. There are people who get melanoma who are younger and fitter than I am but who don’t make it five years. That’s why I don’t push my theory too hard.

It may also be that I’m still here because I’m not done doing the work God has for me to complete in this life. If I knew just what that work was exactly I might find a way to drag it out, so the mystery persists. I have an inkling that I’m supposed to pay attention to the people in my life to see how I can extend grace to them. I’m still a novice at this, so God may be giving me some time to get the hang of it.

What keeps me going? The joy of living the miracle of life. Every day is full of light and color and motion and feelings and interesting thoughts and observations. I live totally at God’s pleasure. By keeping my expectations modest, he delights me by putting simple but amazing things into my life, like home-grown raspberries and a stiff breeze out of the north while biking south. I love exploring the beauty and richness of my corner of the world. I am blessed beyond measure.

3.     You've achieved or witnessed some great personal and family highlights during the past five years, including your Boston Marathon run, several graduations and an engagement. What are your long-range goals, or do your goals now only extend in five-year increments?

I have no long-range goals. Not one. Living into my 80s would be nice, but that would come as a great surprise. There was a time three years ago when I joked I wasn’t buying any green bananas. I’ve had 11 subcutaneous metastases removed in the last 20 months—roughly one every two months. So planning things a couple of months out feels about right to me. Perhaps that’s short-sighted as I know it’s possible I could live for years. Some people get lucky that way.

Allie is getting married on Dec. 31, so that’s obviously a big event I expect to be around for. I’ve done my share of bargaining with God about wanting to see my kids graduate from high school, and then college, and then get married… And he’s granted me those desires of my heart. What now? Well, living to see some grandkids would be pretty cool. I’d like to bike across the country. I’ve also been thinking it may be time to learn how to surf. My ambitions, such as they are, change with the weather. I feel pretty good about what I’ve accomplished and experienced in life. I’ve thought about writing a book, but I’m afraid this blog will have to do.

4.     Does a melanoma patient ever put the disease aside, or is it always lurking nearby?

I’ve known people who were much less mindful about having melanoma than I am. Some of them, of course, were or are simply in denial. I guess my heightened awareness has something to do with how mel presents itself these days as dark bumps under the skin. There always seem to be a new one, so in that way it’s always physically present and sort of hard to ignore.

Writing this blog keeps my head in the melanoma game too. If I had to work full-time, I’d probably learn to shelve thoughts about the disease for stretches of time. But I like to follow the research and the news about melanoma, and I believe that some of my blog posts may do someone some good, so I keep at it. I guess you could say I sublimate by turning my preoccupation with melanoma into a socially acceptable intellectual pursuit.

5.     Erle Stanley Gardner described death as a "round black ball." Assuming death, to you, was a bowling ball five years ago, what kind of a ball is it today?

Who do you think you are asking a question like that? Perry Mason? I think I have the clever answer you’re obviously looking for. If death was a bowling ball five years ago, then today it’s merely an eight ball. It may be black, and I may be behind it, but I’m doing everything I can to keep it out of the pocket.

6.     How self-actualizing has the disease been for you, and what is the most important lesson you have learned during your walk with melanoma?

Sheesh. Now you’re going all squishy on me. If I understand your question correctly, Dr. Freud, I believe I’m much more “me” today than I was before I knew I had cancer. I know things about myself that I didn’t much question when everything was chill. I’ve written about many of the lessons I’ve learned. One that comes to mind is that I’m not ultimately in control of my life. That was quite a revelation when it first came over me. As a follower of Jesus Christ, I know that I’ve been bought with a price. I am his, now and forever. I’ve known this intellectually for a long time, but I understand it now deep in my bones. What better lesson is there than to learn that you are beloved as you have been made by the master of the cosmos?

7.     At times, melanoma has dragged you through the mud. When the mud settles, are you usually able to glean something positive?

To extend your metaphor, I’ve had to hose myself down a few times to clean up. Every treatment episode—be it surgery, interferon, radiation, or whatnot—tends to darken my mind. I get a visceral reaction whenever I walk into the lobby of the Knight Cancer Center at OHSU. I guess you could call it dread. It’s not where I ever want to be, even though I know the people there have good intentions. Those days constitute the mud. I hose down by not thinking a lot about them, and try to focus instead on good things. I suspect most cancer patients learn to cope this way. I recall waking up in a hospital bed the day of my lymphadenectomy in 2008, noticing that there was a small plastic tube inserted into my penis, and thinking, “Hey, that’s cool. I don’t even have the urge to pee. It just happens!” So I guess that’s looking at the bright side, isn’t it?

8.     How has your walk with and understanding of God changed in recent years?

I think I know more about God by having read much more of the Bible and other interesting books by spiritual teachers of one sort or another. Better by far, I know him and trust him as I didn’t before. His presence with me is more real than I expected it could be. I work things out with him in prayer and just in ordinary thoughts all the time. I also run and bike with God. My thoughts constantly return to him and his activity in the world, just by the inclination of my heart. I wish I had gotten to this point of drawing from the well of his peace and security earlier in my life. Melanoma forced me there, but now I never want to leave it.

9.     Who has been your most unforgettable character over the past five years?

The easy answer would be my surgeon, John Vetto, who's a little manic and emotionally remote but with whom I’ve had 12 or so successful encounters over the last five years. I won’t let anyone else cut on me; he knows what he’s doing. I'm an assertive patient, so we get along OK. The fact that he looks like an older, balder version of Gomez Addams from the “Addams Family” TV show only adds to his mystique.

Collectively, the chemo nurses at the Corvallis Clinic were pretty amazing. Very compassionate, efficient and friendly. I did my interferon infusions at the clinic’s chemo lab. It was a rough month, but the nurses whose names I’ve now forgotten were incredibly kind. Competence matters, but these women were also sympathetic and attentive. They were angels of mercy.

10.                        In the end, none of us is guaranteed tomorrow. We're all battling some kind of terminal disease, although we often don't know what it is. Does that equalize the playing field at all and help to put melanoma in perspective?

It absolutely does. The thing about not dying from cancer is that it means you’re going die from something else, and some of those possibilities make cancer look pretty good. We’ve all heard the saying that no one gets out of here alive. One’s departure is all a matter of timing. I think we’d be better people if we started living like we actually believe we’re not going to live forever. We have to get over our immortality complex. The truth is, we all will suffer, if not now, then soon enough.

11.                         In many respects, you’ve always lived life more fully than most people. Has melanoma made it harder, or easier, to do that?

Allow me to quote Thoreau: “I went to the woods because I wanted to live deliberately, I wanted to live deep and suck out all the marrow of life, To put to rout all that was not life and not when I had come to die discover that I had not lived.” Having advanced cancer has reminded me I have nothing to lose by living deliberately—to be consciously aware, moment by moment, of where I am and what I’m doing and how God may be present in my circumstances. Immune cells, by the way, are made in the marrow of bones, so I love the imagery of sucking them out—of life regenerating life. That’s such a powerful thought. We should all try to live more deeply, more dangerously than we are. To some extent, melanoma makes that easier for me.