August 23, 1999
Timmi has had a relatively good last few days. After several days of weakness and nausea, she started feeling better and stronger and now is doing quite well. She has just finished the day-care part of this course of chemo, and will be hospitalized overnight Sunday-Monday for the last treatment of the course. Then right before Rosh HaShana she will have another PET scan to see whether and to what extent the chemo reduced the extent of the cancer. If the cancer was significantly reduced, she will get another, I believe identical, course of chemo and then proceed to the planned transplant. If the cancer was not significantly affected, the next step will be the transplant.
So once again we get to spend Rosh HaShana waiting for the results of an important test... so it goes. The main thing is that for the moment Timmi is feeling well. The Reiki certainly helps, and she herself is better at it than anyone else in the family!
Shabbat Shalom to you all and see you at Shul.
August 22, 2004
One of my daughters is scheduled to undergo a medical test tomorrow. Over the past months, she's been having abdominal pain, which has become more frequent and more severe as time goes on. It's been very hard to see her suffer. But now, waiting to find out what's wrong, my empathy for her at the present moment - and possibly my ability to help her as much as I can - are both in danger of being overwhelmed by my anxiety about the test results. I have learned, though, that if I concentrate on doing what I can in the present and try not to dwell on what the future may bring, I'll be able to find a measure of serenity despite my fears.
For me, as (I believe) for any parent of a child who has had cancer, waiting for the results of tests to determine a child’s undiagnosed medical problem is torture. I know that my fears are irrational – the overwhelming probability is that, while she may have a serious chronic condition, her life is not at stake. The problem is that the overwhelming chances were also against Timmi having cancer.
Because that probability was so low, as a matter of fact, Timmi almost died at the age of twelve. Although her pain appeared in the spring, steadily spreading and worsening through the summer and fall, no one thought the probability of leukemia was high enough to test for it until six months after the symptoms first appeared, when she was so anemic that she wouldn't have lasted more than a few more days without a blood transfusion. (Now, of course, the words “she might have died” are ironic. Still, catching her illness in time for treatment gave her another six years – a hard six years, but an entire adolescence.)
So of course it’s not surprising that I feel a deep anxiety when one of my children is in pain and I don’t know why. Knowing the probabilities can’t help any more – we were on the wrong side of the statistics once, so why not again?
I think, though, that a great deal of my anxiety is the result feeling that if I can anticipate something, I can control it. This is the illusion – if I can just know what I’m dealing with, then I’ll be able to do what’s needed to make it better, to make it go away. When in this mode, I live in the future, weighing this eventuality against that course of action, waiting to “know” and planning my moves for when I learn what there is to learn. Of course, knowledge does give us some control. Even when Timmi was finally found to have cancer, she was misdiagnosed at first as suffering from a rare tumor that has nothing in common with leukemia. Our anxiety then caused us to question the diagnosis and insist on reexamining the biopsies; had we not done so, she would have received the wrong chemotherapy and died right then. (There it is again, “She could have died…”)
But ultimately, there’s a limit to how much we control. All our knowledge, all the medical protocols with their 80 percent “cure rate” for leukemia, couldn’t save Timmi’s life, or give her a happier one. All that anxiety didn’t keep her alive. But the fear did drain my emotional resources, and made me less available to Timmi, to my other children, and to Don.
Our need to believe that we're in control also engenders guilt. When I was attending a support group for parents who had lost children to cancer, one of the members of the group kept tearing himself apart for not having saved his son. “I promised him I wouldn’t let him die,” he said over and over again, “and I fell asleep on duty.” It’s so tempting to believe that if we had only done more, or done things differently, our children would still be alive. We're willing to believe this even when the belief causes us overwhelming guilt. But that guilt can become an obsession, taking up all our emotional energy and insinuating its way into our relationships with our other loved ones.
Anxiety and guilt – these are fruits of our need to believe that what happens to us and our loved ones is entirely in our hands. They can consume us, pushing out everything else in our lives. But I’ve come to understand that any control I have over my life exists within very narrow boundaries. So very much that happens to us and to those around us lies in other hands. This understanding is liberating, and frees up a huge store of emotional resources for my family, my work and other important parts of my life. And more than that - the insight goes far beyond the psychological to the very root of my religious experience: When I let go of my tight hold on personal power, then I make room for a higher power to come in and heal me. Christians call this act of letting go “giving it up to God.”
I was able to do this, sometimes, while Timmi was sick. I was able to live in the moment and let go of my anxiety over what this test would show, what effect that therapy would have. I could just be with Timmi, the others in my life, and myself. If Timmi felt good for the moment, I rejoiced. If she hurt, I tried my best to think what I could do right then to help her – massaging her feet, taking her to a movie, getting the hospital staff to increase her pain medication… Those were the times that I was not only more serene within myself, but also more effective, and “there” for Timmi and for my family.
So I've learned that the only way to deal effectively with the trials life keeps throwing at me – including my children’s problems, whether medical, emotional, economic or any other – is to leave guilt to the past and avoid becoming overwhelmed by fear for the future. It’s far from easy, but I’m trying my best to live as fully in the moment as I can, while still remaining a responsible adult who knows how to plan for the future. Those times that I succeed in this - in doing whatever I can for the moment, but acknowledging the limits of my power and giving my fears and anxieties up to God, I come closer to becoming both whole within myself and wholly with the other people in my life.