The Invisible Hourglass

One of the worst days of my life was the day that my mother came home and told me that her doctor had suggested she only had two years to live. From that point forward, it was a constant struggle for both of us not to become obsessed with numbers and "lifeclock" watching. "I've got two Christmases left...and I might be very sick by the second one..." "Two years means maybe one of good health and one where things are getting pretty bad"..."Two years is twenty four months..." It was maddening and ultimately self-defeating. Any chance my mom had of extending those odds and defying the doctor's prognosis was being jeopardized by the stress of feeling the daily "tick tock" of that doomsday clock.

As we went through the process of her disease, we discovered that not only did she have severe emphysema, she also in all probability had lung cancer. (Her emphysema made her so weak that the doctors couldn't safely extract a biopsy sample, but several tests strongly suggested the spots on her lungs were cancerous, and similar tumors were later found in her liver.) We went through what I now realize is a typical emotional roller coaster ride for cancer patients and their families. Despair, hope, more despair, another glimmer of hope, confusion, frustration, depression, more hope, etc. You live from test to test, from appointment to appointment. You fear every phone call after a major test, you become hypervigilant to each and every symptom. And we heard about more prospective timelines. After it became clear that my mom almost certainly had lung cancer, one doctor suggested that she might have "eight months, and maybe a lot less". Her radiologist informed us that "the normal life expectancy of someone with cancer is about one year, though some people live much longer." Later, after a round of radiation and the subsequent discovery of cancer in the liver, the doctor we went to to see about chemotherapy told us that if the chemo worked, she might survive 9 to 12 months, and if she opted not to do it, she might have 3 to 6 months. It was like someone had turned over an invisible hourglass and we had to live our lives knowing that the sand within it was slowly draining into the bottom. But since we couldn't see the hourglass, we had no idea how much sand was left, only that it was running out.

Recently, a good friend of mine named Fred was told that, depending on what treatment option he took for his lymphoma, he might expect to live either 1-2 years or 4-6 months. He chose the latter option, because the former would entail much more intensive treatment that brought with it much more discomfort. Now as I talk to him, I see the same frightened sense of urgency, the same understandable obsession with time and numbers as my mom and I experienced. He's torn between trying to find ways to extend his life, and preparing for the apparently inescapable eventuality that it's going to end fairly soon.

And I notice the same conflict within myself in my conversations with Fred as I had with the situation with my mom. I want to be comforting and encouraging, drawing out whatever fight he has left in him, while at the same time I want to be able to speak to the reality of the situation and not give him false hope. The problem is, I don't know which side to fall down on, and if I try to balance the two, I often feel like I'm hedging my bets and being either less than honest or unnecessarily grim.

I sometimes wonder if I shouldn't have spoken about the finality of things more with my mom. Oh sure, we both heard the outlooks of the doctors. We both knew that emphysema never really gets better, and we knew about what lung cancer does. The question was always "how long?". During the entire period of her illness, there was always someone who said "no one can say for sure." When my aunt and I took her up to Rochester Minnesota to the Mayo Clinic for an evaluation, I told the doctor who saw her about the "two year" comment. He apologized to her on behalf of the other doctor and said that "he didn't have a crystal ball, and neither did the other doctor". This comment really buoyed my mother's spirits, and gave her renewed hope. While the doctor didn't sugarcoat things and said he fundamentally agreed with the original diagnosis, he also acknowledged the essential "unknowableness" of the situation, and took the power of the situation out of the hands of science and placed it at least partially, in the hands of fate.

But the difficult thing for cancer patients and those who love them is, "what do we do with the knowledge (or opinion) once it's spoken?" How do you balance hope with reality, resistance versus acceptance? I remember shortly after we heard my mom's prognosis, I told her that I didn't think we should obsess about the "two year" remark. I told her that instead I'd ask her each day how she felt and we'd just go from there, because ultimately, that's about as much as any of us know. I told her that I didn't know that I wouldn't be hit by a car after leaving the house, or get a disease myself, or any of a hundred other things that would end my life could happen. Obviously, I knew the odds of her passing sooner than I were much greater, but as far as the "truth" goes, that was out of our hands. I just hated to see her totally in the thrall of that invisible hourglass; I wanted her to be herself in whatever time she had left, not someone totally defined by fear and a sense of dread. I don't know if that was the right thing to say or not, and obviously something like that is a lot easier said than done, for the sufferer and for his/her family.

I don't blame doctors for simply answering questions. In both my mom's and my friend Fred's case, they asked the doctors about possible lifespans. The doctors were simply answering based on their experience and the experience of others. And I certainly don't blame my mom or Fred or anyone in that situation for asking. I'd want to know too; at least, I think I would. It's a question you ask on impulse but later I often wonder if my mom didn't regret it a bit. Ultimately, who knows? Situations like that are so intense and so stressful it's difficult if not impossible to know what the "right" response is. If you lean toward hope too strongly, you may end up denying the patient a chance to effectively come to terms with the unchangeable eventuality of their disease; they may be so busy fighting in their final days they don't have a chance reflect, to come to a sense of peace, to say goodbye to loved ones and leave whatever instructions they might choose to. If you lean toward reality too much, you might make the patient feel bereft of hope, totally depressed and unable to see beyond the grim future that lies ahead.

Striking a balance between hope and reality is likewise very difficult; perhaps no one really hits upon the correct mixture in their exchanges with loved ones who are facing terminal illnesses. In the end, perhaps all of us; doctors, patients and loved ones are all in the same murky ethical and emotional boat, simply sailing along in the dark and hoping not to hit anything solid in the process. The ultimate truth is, that like so much of our human experience, no one knows the ultimate truth about how to approach terminal illnesses. We have modern medicine including technologically advanced diagnosis techniques, increasingly effective treatment methods and revolutionary medicine. We have psychological counseling, grief intervention, and religious communities all well equipped and experienced with the process of dying. But in the end, nobody knows for sure. We have to just move forward in the most caring, compassionate way we can and hope that it's right.

My mom only lived for 13 months after her "two year" diagnosis, but she lived for eight months after the "eight months, maybe a lot less" diagnosis. She was preparing for chemotherapy when she got very ill very quickly and passed away. I hope I approached the situation in a way that helped her through it, but again, all I can say for sure is that I did the best I could at the time. While we didn't talk explicitly about death very much, I know it was on both of our minds a lot and it informed and influenced most of our conversations and interactions from that point forward. We had some good times, as always; some quiet times in which we both were silently but noticeably thankful for the other's presence and the loving bond we had shared for so many years.

Fred is still fighting his disease, and I'm in his corner encouraging him. Maybe things will change as time goes on and I'll have to approach it differently, but as with my mom, I'm trying to follow what best suits the person suffering. I suppose it's fitting in a way that the end of our lives should be no more clear cut and no less mysterious than the rest of it. It's an agonizing process, but we are apparently destined to never know for certain how much sand is left in the invisible hourglasses of our loved ones, or in fact, in our own. As long as we alive, we should be alive, not dreading each passing moment or projecting too far into an uncertain future, but cherishing each grain as it falls, respectful that we all only get a finite number.