January 13, 2000
Timmi was released from the hospital on Monday, with mostly normal blood counts. Altogether she was hospitalized for the transplant for less than four weeks - less than half the time she was hospitalized the first time. So as far as the engraftment goes, the transplant was a total success. As I said, now we have to see about GVH and, most important, what effect all this will have on her cancer. For the first month she will not be able to go to enclosed public places (restaurants, movies, school etc.) but after that we hope she will start to be able to go places with a mask.
Paradoxically, coming home was somewhat difficult for Timmi. As long as she was undergoing treatment in the hospital or waiting there for her blood counts to rise sufficiently to enable her to leave, we were focused on short-term goals (sometimes as short term as getting through the next few hours). Now, however, we are in the position of waiting for something which will come, if at all, at some unspecified time, and which will take an unspecified form. She has no idea from one day to the next how she will feel, and however she feels has no way of knowing how long it will last. Also, she is worried about what she will do at home - again, in the hospital she has a certain routine that she developed over the years, but at home there is always the question of what will I do today. At home there is the expectation that life will somehow be "normal", but of course in these circumstances it is very far from a usual life for someone her age. What it seems we will do is schedule a few possible activities for each day, and if she doesn't feel up to a particular activity we will defer it to the next day.
So far since she's been home she has not felt well – different symptoms each day. Sometimes she's not up to doing anything, so she listens to music or, if she's feeling a bit stronger, watches a video. In the afternoon she has generally felt somewhat stronger, so for the last two days she has helped David with a project that he has to do for school. Her Reiki teacher was here yesterday, and next week I hope to take her to the teacher's home for treatments and, if she's up to it, she will learn the second level of Reiki. She may also start some projects in art and in music, again subject to how she's feeling. And she hopes to be able to catch up on at least one or two of her subjects at school, in order to finish twelfth grade with as many matriculation exams as possible (she may possibly be able to finish with Hebrew, Literature and Theater, with some small possibility of Bible).
Her mood, which was down when we first came home, has improved somewhat, and she is now enjoying the family life part of being home. She is discouraged by her physical state (for example, it is quite hard for her to eat, which takes a pretty big chunk of pleasure out of life) but is trying her best to deal with life as it is right now.
Shabbat Shalom to all.
January 29, 2005
A short time ago, I got some very good news - I’ve been accepted to the MSW program that I hope to attend in New York beginning this summer. That brought me one step closer to realizing my plan – hope, really – of becoming a social worker and working with families with a seriously ill child (see “Plans,” October 2004). But financial or family reasons could still prevent me from enrolling in the program. So now I’m waiting to see whether I’ll really be able to do it. It’s not easy to wait, because an important aspect of my future is at stake – the possibility of finally working at a profession that truly suits me, and through which (I believe) I can make a real contribution. In the meantime, I’m trying my best, as Timmi did, “to deal with life as it is right now.”
My professional life was always very important to me. I always knew that what I wanted to do was help make people’s lives a bit better; the only question was how I would go about it. When I discovered that I have a flair for legal reasoning, I decided to go into the field of public interest law – that is, to work for justice for the poor and oppressed. I was going to fight discrimination and exploitation, and make the world a better place. I saw this as a kind of Tikkun Olam (“repairing the world”), which is one of the Jewish religion’s greatest imperatives.
Sadly for me, when I moved to Israel I found that at that time there was no real possibility for me of a career in public interest law. Very few paying jobs existed; I now like to joke to a friend who served for about twenty years as the only permanently-employed litigator for the Association for Civil Rights in Israel that there was exactly one public interest law job in the country when I got here in 1980, and he'd taken it. An exaggeration, but the order of magnitude was about right. And as I needed to help support my family (we came with three children and were planning to have more), volunteering my time wasn’t an option.
So I settled for other jobs, first at a private firm and then in government. I found it hard to get excited about what I was doing in the private sector – a friend once described the typical case in corporate law as “one rich deadbeat suing another rich deadbeat.” But I consoled myself with the fact that the work was at least intellectually stimulating. When I worked for the government, I was involved in several projects that benefited consumers, so it felt a bit like the kind of law I’d hoped to practice. Though it wasn’t what I had dreamed of, it was for the general good and supported my family. I might have stayed on, were it not for the emotional earthquake of Timmi’s illness.
Timmi’s cancer and our family’s experiences made my priorities much clearer to me. I could no longer sit at a meeting, for example, without wondering, “What am I doing here?” After living with so much suffering, I realized that I could no longer relate to business or regulatory issues. What I needed - still need - is to work at a profession in which I may help other people cope with the kind of pain that our family had to go through.
I left law toward the end of Timmi’s first remission. I now work as a mediator, mostly for divorcing couples, and as a grant writer, helping non-profit organizations raise money for the good work they do. But these are temporary solutions, work that I do while I’m waiting to start my “real” professional life. True, my fundraising efforts have indirectly helped disadvantaged Israelis; but I’d much rather be working with them face to face. As a mediator, I help individual couples find a way minimize the trauma to their families during and after a divorce; but what I truly want to do is help families weather the hardest of times together, and build strong relationships with one another.
Thus, my fervent hopes for a career change. But my hope to become a social worker isn’t only about personal fulfillment. I truly believe that, having myself gone through six years of coping with Timmi's illness and its repercussions for our family, I’ll be able to help families in a similar position in ways that others perhaps cannot.
As always, though, life gives no guarantees, and there's a real possibility that things won't work out. Surely I, of all people, should know that. From the time Timmi’s symptoms first appeared, our family spent years waiting. We waited months for a diagnosis. We waited to see if treatment would put her into remission. Whenever she underwent a course of chemotherapy, we waited for the fevers that inevitably followed. We waited to see what side-effects her treatments would have, and how severe they would be. We waited to see if her transplants would produce the right level of Graft Versus Host Disease – too little and the cancer could come back, too much and the GVH could disable or kill her.
For years, we waited to see if Timmi's leukemia would return. We’d been told that after two years of clean tests, we could assume she’d been cured. We waited an extra year for good measure, and began to think that we might be able to start to relax. We even held a small ceremony at our synagogue to thank our community for all its support during Timmi’s illness. A few weeks later, Timmi’s relapse was diagnosed.
Because I know that the worst did happen and could well happen again, my waiting will probably always be tinged with anxiety. But I've learned to keep my fears from overwhelming me. Now, I concentrate on trying to make my life the best I can at any given moment. This focus is what made it possible for me to keep my emotional balance even in the face of the most frightening possibilities, and has enabled me to go on even after my long wait ended in tragedy.
So yes, what I’m waiting for right now is really very important to me. But I can face the chance that in the end my plans won't come to fruition, just as I managed to live for more than six years in the shadow of far worse possibilities. How? I try to focus on the present - on my relationships, obligations, problems and pleasures. And I remind myself that even if things don’t turn out the way I hope they will, life will continue to hold new possibilities: new friends, grandchildren, perhaps even work in a field that I haven’t yet considered. In the meantime, I’ll try my best to wait patiently.