It is less than 3 months ago that I received my diagnosis. I don't pretend to be particularly knowledgeable or insightful about cancer in general or my cancer in particular. I'm certain that many of you have learned many lessons that I still have ahead of me. But the reality of my cancer has made a very strong impression on me, and, as a consequence, I am revisiting the priorities in my life. It is because this is so new to me—that I am going through it now, that it is so fresh in my mind, and that I'm still working to put it together—that I feel I may have something to offer in sharing my thoughts with you today.
While all cancer survivors have much in common, there are also aspects of our situations that distinguish what each of us experiences—both by category and based on our unique personal circumstances.
For me, I think there is a piece of good news and a piece of bad news that affect my reprioritization experience in important ways. The good news is that my treatment has improved my initial symptoms and my side effects are manageable: I actually feel quite good most every day, while I know that some of you have overcome, or are still struggling with, some very difficult times. The bad news is that my Stage IV non-small cell lung cancer is generally considered pretty fatal, and while I have heard and been encouraged by stories of survivors who have shared my diagnosis, the recognition that I may not have much time has been a key factor for me, while it may not have been much of an issue at all for some of you.
What follows, then, are the five priorities that I try and keep before me as I live this new life of a survivor.
1. Encountering my mortality—I don't go out of my way to dwell on it, but when it comes to my consciousness I try always to let it in. And what that means to me is to try and prepare for my death practically, emotionally, and spiritually: Practically (and I do try and spend time on these), by selecting a cemetery plot, updating both my Will and a Living Will, making sure that my wife knows about all the things that, previously, I took care of all by myself. Emotionally, I come from a long-lived family, and had always expected to live to an advanced age (my mother is 91 in excellent health). I am coming to accept that I am very likely to live out the rest of my life in far fewer days, that I may not get to see as much of my children's' lives as my parents have seen of mine, and that each new season might be my last of its kind. Spiritually, I want to come to a state of peace as I imagine this world without me in it—particularly for my family and other loved ones and for the accomplishments I will not have completed. I also hope to be at peace with the possibilities I consider of what I will be once I am dead: be that nowhere or somewhere.
The other side of encountering my mortality is improving my appreciation of why it is important that I do remain alive—what are those things at this time in my life that make me most content, most satisfied, most triumphant and what is the right balance of effort, sacrifice, and cost to achieve them. What is the difference between an ordinary day and an extraordinary one? When do I push myself to grasp something special, and when is it wonderful enough just to be alive?
2. My second priority, and first on a day-to-day basis, is being a good patient and embracing my treatment: This is now my job (only more so), and I have always been conscientious at that. Doing a good job means accepting the framework of the job while bringing my individuality to it, pushing for results, not cutting corners, striving for excellence, treating people well, being a positive influence, and looking to maximize my rewards. Translated to my job as a cancer patient, this means being scrupulous in understanding and following the instructions of my medical team, it means being careful to provide accurate and timely feedback to my medical team, to accommodate the side effects of my treatment as best I can so as not to let them interfere with my treatment schedule, to remain open to alternatives while not grasping at straws, to push myself physically so that I am strong enough to endure, and to respect my medical team's time as well as my own. I am convinced that being a good patient is the most important thing I can do to remain alive.
3. Next on the list is remaining connected, that is, maintaining and enhancing my caring relationships. At this stage of my life the most important of these is to parent our 14-year-old daughter. All adolescents are needy, and my condition only makes it worse. At 14 she doesn't have that many years to go until she is a self-reliant young woman. I don't know how many years I have to help her on that track, but I will give her what I can.
As many of you must surely know, the spouse of a cancer survivor often carries a heavier burden than even the survivor him- or herself. I owe my wife whatever I can give to lighten her burden, including the burden that she may have to watch me die and then go on without me. On the other hand, the cancer has given me more time for her than I have ever had before. We both know that whatever we have left together will be richer, more intense, more dedicated than it could otherwise have been.
Parents do not want to outlive their children, or to see them in pain. My 91-year-old mother has seen a lot and lived a lot. The last thing I want is to bring new sadness to her, and while I can't be sure of sparing her, her good health is yet another important motivation for me to keep up mine.
There are so many other very important relationships: with my other, older children, with my brother and the members of my and my wife's extended families, with the loving and concerned members of our synagogue, with our friends and neighbors, and with my colleagues, and now, with you, my fellow survivors, including those whose experiences have paved the way for the advances that give us so much benefit and hope.
I'd like to make one point about these relationships: Many of the people I know have expressed their caring and want to do something. At first I was uncomfortable with people knowing and making a fuss, but I have come to find that their caring feels good and that the stories of survivors they know actually give me hope. For the most part I am blessed not to need their offers of practical help, but it's good to know that it's there if I—or my family—need it, and it creates a new bond between us.
4. The next priority, alas, is the practical considerations. Medicine may keep me alive and love may make life worth living, but neither of them pays the bills; I still have to do that and make sure that we have what we need to pay them. To be honest, this is not the burden for me that it must surely be for some of you: I expect insurance to provide what we need and we have enough until that kicks in. So I don't have to work full-time anymore, and I don't. There are still many practical details of life that demand attention. But it's fourth priority now, where before it was much higher. That means I'll skip a business call if my daughter needs me or put off paying bills if I feel too fatigued: It didn't used to be that way. I've been told that there's value in living as normal a life as possible, and I miss the constant engagement of my profession as I used to practice it. But that's gone now, and I find engagement in my therapy and normalcy in the practical routines that remain.
5. Last but certainly not least is pleasure: education, entertainment, joy. Despite the surely good advice to laugh every day and to be sure to make time for myself, I find that there are surprisingly many days when there still isn't enough time—not really different than before. It sounds like it should be a higher priority, but the others are too important to push aside. This one is important too, and while I won't sacrifice my health or my responsibilities, I keep thinking about how I can give myself more, so that I don't sit in silence when I'm fatigued, but listen to music, I take my exercise amidst the beauty of a park whenever I can, read when I have a few moments, and plan to travel while my energy level is high. And as to laughter, whenever I see my son Nick, his laptop is locked and loaded with a selected episode of South Park: Who could ask for anything more?
So these are my adaptations so far. My life is permanently very different than it was just a few months ago. I expect my condition to change and I will change with it, though I don't know how. I'm sure that many of you have made great adaptations and gained great wisdom. I would love to learn from you. Some of you may be in a similar place to me—just recovering from the shock, and figuring out how to respond: I hope that I have been some help to you. If it's appropriate at this forum to hear some of what you, my fellow survivors, have learned, it'd be wonderful if a few of you might feel called to share. In any case, I spend a fair amount of time in the waiting rooms of the ninth floor of the Irving Pavilion: Please feel free to tell me your adaptive strategies: We're all in this together.
