September 29, 2000
A quick and optimistic update for the New Year - one of Timmi's doctors called this morning and said that because at least some of her discomfort may be due to GVH, they would like to try a new anti-GVH drug that may ease her symptoms but will not totally suppress the GVH (and thus risk a fast and strong relapse of the cancer). It is given one dose at a time, and after each dose her condition is evaluated after a week or two, in order to see whether she should be given more. This measured response to GVH is indeed something new, as up to now every time she has had GVH the medications she has received have totally suppressed it - the last time, causing the terrible relapse she had this summer. If, however, there is a way that she won't have to choose between being miserable with GVH or getting her cancer back, that would be wonderful news indeed.
Of course, we don't know even whether Timmi is in fact suffering from GVH, and if she is whether the new medication will help. But this is the first time in several weeks that we have heard of something which has a chance of helping her feel better. So I wanted to share it with you all.
Shana Tova* again,
October 7, 2000
Well, the "new" medication that the doctor told me last Friday that they want to try turned out not to be so new after all. The plan now is to give her a light dose of a certain kind of chemotherapy (which she has had before) once a week, in the hope that it may help with the GVH, if that is what she is suffering from, or if her problem is some kind of a relapse then it may help with that as well (it could be, of course, that Timmi is suffering from both). In addition, she is now getting a very low dose of steroids, hopefully enough to help her feel a bit better but not enough for nasty side effects.
Tuesday she got the chemo, as well as some plasma, which apparently made her feel somewhat better temporarily, as she was awake and participating in family life for a few hours that afternoon. Other than that, however, the week has been mostly a dud, with Timmi spending all day in bed (sleeping most of the time) on Monday, Wednesday and most of yesterday. When she was awake those days, she felt awful, with a perpetual headache, pain in her stomach and the soles of her feet, nausea and vomiting and such weakness that she had the strength to do nothing.
Yesterday I spoke with Nathan Cherney about the pain and at his suggestion we added a "pain patch" of Fentanil (a kind of narcotic). He will also speak with Professor Cividalli about what more may be done for her.
Today, the steroids seem to have kicked in. She was up early and has been up since, tried (unsuccessfully) to eat, watched a video, read and has been generally awake and mentally if not physically active. The downside of the steroids is that she hardly slept last night. Also, the extra Fentanil seems to be working, as she has been having significantly less pain so far today.
We hope that her renewed strength will last, and that the sleeping problem will be solved. Also, of course, that the steroids, however low the dose she is getting, will not suppress any GVH that she may have and that may be holding the cancer at bay.
Shabbat Shalom and G'mar Hatima Tova.**
October 13, 2000
There isn't really anything new to report. We had up days and down days, down days being those during which Timmi slept most of the time and felt quite bad when awake, and up days being those during which she had the strength to stay awake and read, watch videos, knit etc., despite not feeling very well physically. Her mood, when awake, has been pretty good, considering. Also, she is now sometimes able to eat a small amount and keep it down.
The doctors have no explanation for her symptoms, which now include pain in some not-very-encouraging places (various bones). The final results of the biopsy that was done on her stomach lining showed no evidence of GVH or anything else specific. Because her liver function improved somewhat after the treatment she received last week, after Succot we will re-check her blood clotting function in order to see whether that has also improved, and sufficiently to enable a liver biopsy to be performed. In the meantime, we are hoping that what we are seeing is not some kind of relapse, but rather some kind of GVH or other effects of the transplant.
One nice thing is that on Saturday evening we and Lisa are hoping to take her to a performance by the mime Hanoch Rosen, for her 18th birthday, the Hebrew day of which falls just then (and Sunday). We really hope she will be up to it, and will enjoy herself and be able to stay to the end.
I wish all of us a year that will change direction radically from the way in which it has started, and bring peace, prosperity and good health to all of you who are reading this, as well as to all of those of us who live in this troubled land.
Shabbat Shalom and Hag Sameach,***
* Shana Tova – Happy Jewish New Year.
** G’mar Hatima Tova – A greeting given before Yom Kippur (the Day of Atonement), meaning more or less “May you be inscribed in the Book of Life” during the coming year.
*** Hag Sameach – Happy Holiday.
October 15, 2005
Readers who have been following this blog know that in each post I try to find and develop a theme common to what I was experiencing five years ago and where I am today. But for the last two weeks I’ve been reading and rereading the updates to my community around this time in 2004, and haven’t been able to find a single thread connecting my life then and my life now. So what can I write about? I asked myself. Then I realized that the very fact that things are so different today than they were then is very big news indeed. Now, at the time of year at which Jews are called upon to return to the spiritual path that God has set out for us, I realize that although my spiritual journey is still far from its end, through God’s grace I am well on my way to returning both to the work I was meant to do in the world, and to a part of my inner self from which I was separated when Timmi died.
Last Thursday, we observed the Day of Atonement, Yom Kippur. Yom Kippur is the most important day of fasting and prayer in the Jewish calendar, as it is the day on which we may receive forgiveness from God for our sins of the previous year (see “Forgiveness,” September 2004). In order to be forgiven, Jews are enjoined to engage in the process of teshuva. While this Hebrew word is often translated as “repentance,” its literal meaning is “return;” that is, Judaism calls on us to come back to God and to His path. To me, this means that we human beings start our lives in a state of innocence; that our innermost core was created in a state of natural grace. Transgression of God’s commandments distances us from our true selves, which continue to long for our original condition of closeness with our Creator. Teshuva offers us the opportunity to bring our souls back into harmony with the Divine will, wherever we are before starting the process. This is an intensely optimistic concept – we always possess the capacity to change.
I remember how, when I first began to observe the Jewish commandments and many years afterward, my sense of nearness to God after Yom Kippur was almost physical. It was one of the most pure and beautiful feelings I have ever experienced, as if I were filled with a radiant but gentle light. That feeling sustained me throughout the year, and sometimes – during prayer, when I visited a place of great natural beauty, or occasionally even just while walking here in Jerusalem – I could actually sense that God was near. This feeling (knowledge?) gave me courage and strength with which to face a very challenging life.
But then my daughter was taken – and with her my ability to feel the small spark of Divine presence with which I had been blessed at special times before then. Since then, I’ve had to take Yom Kippur on faith alone. The day is still powerfully significant to me because I know, at least in my mind, that through its observance I may return to God’s path. But so far a sense of God’s presence has not returned to my heart. And I’m not sure it will ever again return; my ability to sense God near me may be just one more loss for me to process.
What God has given me, though, is the courage and the strength for two different kinds of return. One is related to my active, outer self – I’ve begun to beat a path back toward a life that I lost during the last stages of Timmi's illness; indeed, to return to full life after living for a long time in a state of suspension after she died. The other relates to my inner self – I’m well on my way to regaining a capacity for happiness that I was afraid had disappeared forever.
When I look back at my updates of five years ago, I am amazed at how my entire life then revolved around caring for Timmi (and trying to give whatever attention I could to my other children). Is she in pain today? If so, where does it hurt, and does it hurt more or less than it did yesterday? Did she eat today? If so, did she keep it down? Does she have the strength to do anything at all? If so, what kind of activity can we find that might cheer her up? And is there anything we can do together with her as well as with at least some of her siblings? Does she show signs of GVH? Of a return of the cancer? My universe, which had once included a full professional life, social life and family life, had shrunk to the dimensions of a blood test report, a light soup that Timmi’s stomach might be able to tolerate, a video that’s amusing enough to be diverting but doesn’t demand too much concentration.
After Timmi died, my world contracted even further, to include practically nothing but my own grief and that of my family. I sometimes made forays into the “real” world – I joined a book club, did an occasional translation, met friends for lunch – but when I was alone with myself, almost everything outside our family’s bereavement seemed meaningless. When I was with other people, a thick wall separated me from them, a wall so massive that I could practically see it. It was as if I were no longer really living – and it seemed as if the nightmare would go on forever, that I’d never really return to the land of the living. And in that state of suspension, anything beyond a moment or two of happiness at any one time seemed permanently beyond my grasp.
But when I look at my life now, I see that I am on my way back after all. I’m moving in the direction of a meaningful work life, in which I’ll be able to help other families get through their own nightmare of a child’s terrible illness. The wall between me and the rest of humanity, while it still exists, has now been breached in many places by the love of friends who care about me; when I was in New York for my MSW studies this summer, I was even able to renew old relationships and to make new close friendships. And my family has been freed from the frozen depression that sometimes dominated the atmosphere at home following Timmi's death – my children can now speak freely of their sister, her illness, and her death without needing to run and lock themselves in their rooms at the very mention of her name. Her memory is no longer a shadow hovering over us, but rather a presence that we will always carry with us, a source of tears but also of warm memories and laughter. Like the teshuva of the Jewish religious concept, this kind of worldly teshuva is a return to the way we were meant to be when we were created: we were put on this earth to be active agents in bettering it (“repairing the world,” in the Hebrew expression). We were meant to work, to participate in human society and to raise children who may carry on our work after us. I am, thank God, well on my way back to all of these.
And this return to a fuller life in the world has brought about an inner return for me as well. By nature, I have always been quite an optimistic person, believing in the possibility of happiness even when it eluded me at any particular time. Timmi’s death was a severe blow to my optimism; how could happiness ever be possible again after losing her, when every day I am reminded of that loss by her absence? But amazingly – miraculously, perhaps – I’ve found that as I’ve been able to make my way back to an active and meaningful work, social and family life, my connection with the inner core of optimism and capacity for happiness with which I was created has also been restored to me.
Through the process of teshuva, God gives me the opportunity every year to wipe my spiritual slate clean and return to a state of natural grace. I don’t know if my spiritual teshuva will ever be strong or complete enough to enable me to go back to the kind of naïve and innocent sense of God’s presence that I had before Timmi’s cancer irrevocably changed my life and the lives of all my family. But I do know that God has granted me a different but no less precious gift – an ability to change what I do with my time in this world. Even if I’ll never be able to return to the life I led in those days of innocence before I lost my daughter, then God has at least inscribed me in the Book of a true, meaningful, and even potentially happy existence during my lifetime – even after that crushing loss.