October 21, 2005
We are now celebrating the middle day of the seven-day festival of Succot (the Feast of Tabernacles). During this holiday, we eat and, where possible, sleep in a temporary dwelling (succah) made of wood, cloth, or (in the modern age) plastic, with a roof consisting only of palm leaves, woven bamboo mats or other material derived from the plant world. We do this in order to remind ourselves – to reenact, in a way – the existence of the Children of Israel during the Exodus from Egypt and their forty years’ wandering in the desert: vulnerable, insecure, and dependent only on God.
Paradoxically, perhaps, Succot was also defined by our Sages as our “time of happiness,” the holiday during when we are enjoined to rejoice. (Our own wooden succah is located the parking lot, six floors down from our apartment. We’ve seen it destroyed one year by a car and blown away another year by a storm, and we’ve had neighbors play “pranks” on us such as throwing bottles filled with water onto the succah's roof. There is a running argument in our family as to whether we should be envious of people who build their succah on an open balcony of their apartment or in a garden adjoining their home, because they can enjoy the holiday that much more easily, or feel superior because in our vulnerablility we are really, truly fulfilling the spirit of the commandment.)
One of the ways we add to the holiday's joy is through hospitality – inviting guests, called by their Aramaic name ushpizin, into the succah to share a meal with us. According to Jewish tradition, we welcome more than our friends and family into our temporary home. It is said that on each day of the holiday, the spirit of one of our forefathers comes to visit. On the first night we welcome Abraham, on the second we receive Isaac, and on the third, Jacob – followed in turn by Joseph, Moses, Aaron and finally by King David. Our family marks this by singing a special song welcoming each visitor from the ancient past to our holiday meal. It's really a children's song, but we love singing it even though our children are now adults (or almost adults) – it's one of our little family rituals, which makes us feel close to one another by reminding us of all the years we've been singing together, in the succah and everywhere else.
On the first (and most important) night of the holiday, when we had just finished our song of welcome, Shari surprised us by saying with a smile, “Maybe tomorrow Timmi will come and be our guest in the succah. It will be her birthday, after all.” I carefully watched for the other children’s reactions. Not so long ago, they would most likely have looked down at their plates and not said anything. During the first years of our mourning, some might even have left the table in order to cry in the privacy of their rooms. But when I looked at Aimee, she too was smiling. “Maybe we should ask Angela” – a friend who sometimes sees the spirits of those who have left this world (see “Healing," August 2004) – she said, half-laughingly.
I think that at that moment all of us at the table felt bound to each other in a mixture of contradictory feelings – a warm happiness at our memories of Timmi, a deep sadness that she will never again sing with us, and an intense yearning for the possibility that, in honor of her birthday, she might actually make this Succot “our time of joy” by joining the Patriarch Isaac the next evening as one of the ushpizin at our table.
If only.
Saturday, October 22, 2005
Sunday, October 16, 2005
Return
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,
Sara
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.**
Love,
Sara
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,***
With love,
Sara
* 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.
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,
Sara
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.**
Love,
Sara
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,***
With love,
Sara
* 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.
Monday, October 03, 2005
Something to Do
August 31, 2000
Timmi's week was better than the last one, though still far from "good". The best news is that we seem to have found a solution to the problem she was having of constant nausea. Since she started taking the medication, she has been feeling better when awake. In fact, each day this week we have taken her out for a certain period of time: Sunday for a drive, Monday to her aunt's house (for several hours (!) during which she talked, watched TV, read a book to her 4-year-old cousin, etc.), Tuesday to the zoo, yesterday to Tel Aviv and today to the Botanic Garden. Today she actually was more tired than she had been in the last few days, but I hope that's temporary and the positive trend will continue.
We are continuing to reduce the dosage of her narcotic painkiller, and so far this has not resulted in an increase in pain. This means that she sleeps less than she did previously, though she still does sleep most of the time. The main problem is that, except in the late afternoon, if she wakes up for any length of time she wants to do something to pass the time but doesn't have the strength/patience to do anything. I wish I were more creative and could think of things for her to do that she could get into, but all my suggestions are met with "it's too much effort". This is, of course, most frustrating. What we really hope is that in the near future her condition will improve and stabilize to the point where she can again plan regular activity - study for one matriculation exam, even work or volunteer a couple of times a week. This will give her life some structure, as well as free us from the constant challenge of finding things for her to do.
As for the large picture, as I said so far her pain has not come back, which is a good sign. There are not many signs of GVH, but the little there is may indeed be working. God willing.
Shabbat Shalom.
Love, Sara
September 7, 2000
Unlike in my last message, I can't say that Timmi had a better week this week than last. She continues to experience weakness, nausea and vomiting, and often feels she has no strength to do anything. Much of our time and energy is spent trying to convince her to try and do something, empathizing with her when she feels depressed, and taking her places in the hope that she will feel good enough to enjoy the outing. It sometimes works, often doesn't. Very difficult; and who knows how long this will go on. She still has no pain, though, which is a blessing.
My week was somewhat better than last, as with the younger kids back at school I was able to taste "real" life, which I haven't done for a long time. I mediated, volunteered at Na'amat and translated a little. I also exercised three times. As a result, my own mood was for the most part much better. I just hope I'll be able to impart some of it to Timmi.
Shabbat Shalom to all.
Love, Sara
September 22, 2000
I didn't write last week because it was much the same as the week before, with various ups and downs. Things started to improve last Friday, when Timmi started to feel somewhat stronger, and on Shabbateven visited with a friend, a thing which she hasn't done in months. The improvement lasted through Monday early afternoon; during the noon hours Daniel and I took her (in her wheelchair, of course) to see the Biblical Landscapes exhibition at the Israel Museum, which she enjoyed greatly, making detailed observations about the various paintings we saw. We were there for two hours, and saw and commented on every painting in the exhibition, and we really felt that things were starting to go in the right direction.
Then, Monday afternoon, Timmi felt a numbness in one of her fingers, which then spread to her entire right side. She was unable to use her hands (or even lift her arm) and couldn't stand on her feet. Worse, she was unable to speak, write or even point to letters to make words – she later told us that no sooner would she think of a word she wanted to say than the word would change in her head to something else. Needless to say, this shook and scared her and us very badly, and it was a huge relief when it went away after a few hours.
The next day, Tuesday, she had an EEG and a CT scan, the results of both of which were normal. Her doctor therefore thinks that what happened may probably be attributed to "neuritis", an inflammation of the nerves that sometimes affects people after a bone marrow transplant. This neuritis, if that is what she has, would also explain some of her other symptoms, such as muscle spasms - from which she suffers regularly, and more and more in recent times - and shaking. The good news is, of course, that it seems that Timora's neurological problems are not a result of a problem in her brain. The bad news is that no one knows exactly what causes the neuritis or how to treat it. Luckily, it does go away in most cases; no one can predict when.
Besides her neurological symptoms, Timora has been feeling steadily worse since Monday evening - weak, nauseated, stomach pains, vomiting, headaches, pains in her thighs (these last may be due to muscle atrophy), still can't eat or drink. She had a gastroendoscopy yesterday (Wednesday) in an attempt to understand her stomach problems. Nothing was seen in the endoscopy itself, but the doctor took biopsies and cultures from the stomach lining and we should have the results early next week.
Her liver functions are also getting steadily worse, and her white blood cell count continues to rise. Her doctor would like to do a biopsy of her liver to see whether the problems there (and perhaps at least some of her other problems as well) are due to GVH. The difficulty is that because of the damage to her liver, her blood clotting functions are also abnormal, and under those conditions it is impossible to do a biopsy. Catch 22.
She is again very depressed at her inability to do anything because of her physical condition, and as always frustrated by the ephemeral nature of all progress that she seems to make. It is very hard for us to do anything for her, which is heartbreaking for us. But we still hope that things will improve, if we figure out the causes of her present condition.
We are starting to make arrangements to have someone come in to be with her two mornings a week, so that we will both be free those days to work or do other things that need to get done; Kupat Holim (our HMO) will cover the cost. I just hope we find someone compatible with Timmi - she's not so easy to please as far as people outside the family are concerned. But having started getting out into the outside world again, I see how crucial working is to my morale; I am now mediating two cases and this has had a very positive effect on me. Work and exercise - those are the things that help me most at this point.
Shabbat Shalom to all of you, and if I don't write before then, Shana Tova.
Love,
Sara
October 1, 2005
I’m starting this post on Saturday evening, after Shabbat has gone out. My mood tends to get blue as the Sabbath draws to a close. Not surprisingly, many observant Jews feel sad as this time approaches. It’s never easy to leave behind the peace and pleasures of our weekly day of physical and spiritual rest, and face our re-entry into the rather frantic world of work and day-to-day obligations. For me, this feeling has been intensified over the past several years by the fear that I won’t be able to do what life demands of me. Worse, as I prepare to face the week, I’m haunted by the question whether there’s anything that’s truly worth doing. But my answer is always yes. Meaningful activity – being a mother to my children and a wife to Don, interacting with the others in my life and, now, preparing to enter a profession in which I’ll be able to fulfill the Jewish commandment to “repair the world” – not only keeps me going, but makes life worth living. I thank God every day for giving me meaningful work to do, and the strength with which to do it.
Five years ago, Timmi no longer belonged to any framework of regular activity. Her involvement with her drama group had ended with the group’s grand production (see “The High Point of a Life,” May 2005). She had finished taking those matriculation exams that she could manage for that academic year. Her class had graduated and the girls were starting their military or alternative national service. She was out of the hospital, still feeling awful from the treatment she’s been given, and with no goal to work toward that could distract her from her body’s slow deterioration. And so she entered a vicious downward spiral: as she weakened, she was able to engage in fewer activities, and as her days became emptier, she became still weaker, which meant that she had even less strength to do the things we tried to find to help her fill her time. From time to time, she rallied, and did as much as her body would allow her to do. But as time went by, those times became fewer and farther between.
Timmi had always been extremely active, involved in many areas all at once – music, writing, reading, drawing, joking, acting, interacting with her family and her peers, and so much more – and was always excited about learning new things. Even when she was hospitalized or home-bound due to her leukemia or the treatment for it, she kept as busy as her physical strength allowed. In the hospital we'd rent her a television (a novelty for her, as we've never had a TV at home), for when she was unable to read or talk with whoever was staying with her. When I was with her there, we'd watch together - and Timmi would always have something to say about the cultural and moral values reflected in whatever we were watching. She transformed even the silliest shows into learning opportunities. For example, she used South American telenovellas to start to teach herself Spanish, keeping by her bed a vocabulary list to which she would add new words every time she watched, and would occasionally speak to me in simple (sometimes broken) Spanish. When she was up to it, she played all kinds of games - puppet games with her older sisters, or dress-up, when she'd take a scarf, drape it over her hair and tie it under her chin like the mothers of some of the Arab children in the ward. (This last game reminded me of how when she was little she used to exchange shoes with her friends, and they'd pretend to be each other.) During her second illness, she not only did whatever schoolwork she could, but also started driving lessons and worked a few hours a week for the Israel office of the Anti-Defamation League.
But now, my heart broke slowly as she began to lose interest in the world around her, even in the things she had loved most passionately until then. When we tried playing her favorite records she asked us to stop, saying the noise disturbed her. She could no longer write stories or poetry, of course, nor could she even concentrate on movies or television. We bought her a new kitten, knowing how much she loved animals, and remembering how she used to spend hours playing with our first cat, Snow, who used to seek her out in order to sleep on her lap, or with her in bed. (She used to hold long conversations with the cat: “Snow,” she would croon. “Meow,” Snow would answer. “Snow,” she would repeat; “Meow,” Snow would again reply. The dialogue would go on like that: “Snow” “Meow;” “Snow,” “Meow;” until it would end with a long “Snooooooow,” and a final “Meooooooow.”) But even the new kitten failed to keep Timmi’s attention for more than a minute or two, and soon after it arrived, Timmi entered the hospital for the last time.
I’ve mentioned more than once that after Timmi died I went through a long period in which I also had no strength to do any but the most urgent tasks, and nothing seemed worth the effort. Like Timmi, I'd been a "doer" to the point of hyperactivity. I had my first baby during my second year in law school, my second a week after graduating, my third right after finishing a clerkship on the Federal Court of Appeals in San Fransisco - and moved to Israel a month later. Right after learning Hebrew, I started courses at Hebrew University toward a Masters degree in Jewish law (which I never completed because financial pressures required that I enter the work force). From there I went on to a very demanding professional life, having four more children along the way. So during the long stretch of lethargy I experienced after Timmi died, it felt as if I were not really living, or not really living as myself.
Thank God, I’ve regained much of my strength, and started on a very meaningful path in anticipation of a new career as a social worker. But I still tend to worry abount my energy level. While I was in New York for my studies this summer, I felt very anxious at first – would I really have the energy to complete the work for six courses in seven weeks? True, back in the old days I’d worked at a full-time-plus career while raising (together with Don) seven children. But those times were long gone; before leaving for New York I’d been barely able to work five hours a day at my job, and often had to leave non-urgent household business unattended to. How would I handle six hours a day of classes plus homework and two papers every week?
As the summer went by and I got into the routine, though, I discovered that I really was capable of doing what was required of me - and the very fact of being actively engaged in such a maningful and intensive project energized me. In a sense, I reversed the cycle that had held Timmi in its grip the last few months of her life: the more I did, the more energy I had, and the more strength I had the more I did. In fact, I've returned from New York with a sense that my life has finally become unstuck, and feeling – for the first time in many years – truly optimistic about the future.
Still, there are times when the old lethargy and sense of hopelessness take over. At those times, I get a glimpse of how Timmi must have felt during those last months: without meaningful activity, life itself feels meaningless. How incredibly difficult this must have been for Timmi, who had always been full of boundless energy, enthusiasm and plans for the future, and who had sought meaning in all aspects of her life and her world! The thought is really too painful for me to bear for long.
When I begin to feel weighed down by the memory of how Timmi’s life force slowly drained away, or by my own lack of strength or sense of meaninglessness, I pull myself out of it by finding something significant – however small – to do. This past Shabbat, for example, the blue feeling started to come over me as I was sitting with Shari, sharing the traditional Sabbath “third meal” in the late afternoon. Suddenly Shari said, “Let’s sing!” What a great idea, I said – and we agreed that it’s nearly always a great idea to sing. So we sang together the two songs with which Jews have traditionally bade the Sabbath farewell – Psalm 23 (The Lord is my Shepherd), and “Yedid Nefesh” (Friend of My Soul), a kind of love song to God. By the time we finished, the blues had left me, and I once again felt ready to use the strength I’d gathered over Shabbat to go out into the world and do what I must as a believing Jew, a mother, a wife, a student, and a friend.
I’m finishing this post just before the beginning of Rosh HaShana, the Jewish New Year. At this time of reflection and renewal, my wish is that God will give all of us the strength and the wisdom to fill our own lives with meaning, and help us to do the same for those around us.
Shana Tova – I wish all my readers a happy, healthy and sweet year.
Timmi's week was better than the last one, though still far from "good". The best news is that we seem to have found a solution to the problem she was having of constant nausea. Since she started taking the medication, she has been feeling better when awake. In fact, each day this week we have taken her out for a certain period of time: Sunday for a drive, Monday to her aunt's house (for several hours (!) during which she talked, watched TV, read a book to her 4-year-old cousin, etc.), Tuesday to the zoo, yesterday to Tel Aviv and today to the Botanic Garden. Today she actually was more tired than she had been in the last few days, but I hope that's temporary and the positive trend will continue.
We are continuing to reduce the dosage of her narcotic painkiller, and so far this has not resulted in an increase in pain. This means that she sleeps less than she did previously, though she still does sleep most of the time. The main problem is that, except in the late afternoon, if she wakes up for any length of time she wants to do something to pass the time but doesn't have the strength/patience to do anything. I wish I were more creative and could think of things for her to do that she could get into, but all my suggestions are met with "it's too much effort". This is, of course, most frustrating. What we really hope is that in the near future her condition will improve and stabilize to the point where she can again plan regular activity - study for one matriculation exam, even work or volunteer a couple of times a week. This will give her life some structure, as well as free us from the constant challenge of finding things for her to do.
As for the large picture, as I said so far her pain has not come back, which is a good sign. There are not many signs of GVH, but the little there is may indeed be working. God willing.
Shabbat Shalom.
Love, Sara
September 7, 2000
Unlike in my last message, I can't say that Timmi had a better week this week than last. She continues to experience weakness, nausea and vomiting, and often feels she has no strength to do anything. Much of our time and energy is spent trying to convince her to try and do something, empathizing with her when she feels depressed, and taking her places in the hope that she will feel good enough to enjoy the outing. It sometimes works, often doesn't. Very difficult; and who knows how long this will go on. She still has no pain, though, which is a blessing.
My week was somewhat better than last, as with the younger kids back at school I was able to taste "real" life, which I haven't done for a long time. I mediated, volunteered at Na'amat and translated a little. I also exercised three times. As a result, my own mood was for the most part much better. I just hope I'll be able to impart some of it to Timmi.
Shabbat Shalom to all.
Love, Sara
September 22, 2000
I didn't write last week because it was much the same as the week before, with various ups and downs. Things started to improve last Friday, when Timmi started to feel somewhat stronger, and on Shabbateven visited with a friend, a thing which she hasn't done in months. The improvement lasted through Monday early afternoon; during the noon hours Daniel and I took her (in her wheelchair, of course) to see the Biblical Landscapes exhibition at the Israel Museum, which she enjoyed greatly, making detailed observations about the various paintings we saw. We were there for two hours, and saw and commented on every painting in the exhibition, and we really felt that things were starting to go in the right direction.
Then, Monday afternoon, Timmi felt a numbness in one of her fingers, which then spread to her entire right side. She was unable to use her hands (or even lift her arm) and couldn't stand on her feet. Worse, she was unable to speak, write or even point to letters to make words – she later told us that no sooner would she think of a word she wanted to say than the word would change in her head to something else. Needless to say, this shook and scared her and us very badly, and it was a huge relief when it went away after a few hours.
The next day, Tuesday, she had an EEG and a CT scan, the results of both of which were normal. Her doctor therefore thinks that what happened may probably be attributed to "neuritis", an inflammation of the nerves that sometimes affects people after a bone marrow transplant. This neuritis, if that is what she has, would also explain some of her other symptoms, such as muscle spasms - from which she suffers regularly, and more and more in recent times - and shaking. The good news is, of course, that it seems that Timora's neurological problems are not a result of a problem in her brain. The bad news is that no one knows exactly what causes the neuritis or how to treat it. Luckily, it does go away in most cases; no one can predict when.
Besides her neurological symptoms, Timora has been feeling steadily worse since Monday evening - weak, nauseated, stomach pains, vomiting, headaches, pains in her thighs (these last may be due to muscle atrophy), still can't eat or drink. She had a gastroendoscopy yesterday (Wednesday) in an attempt to understand her stomach problems. Nothing was seen in the endoscopy itself, but the doctor took biopsies and cultures from the stomach lining and we should have the results early next week.
Her liver functions are also getting steadily worse, and her white blood cell count continues to rise. Her doctor would like to do a biopsy of her liver to see whether the problems there (and perhaps at least some of her other problems as well) are due to GVH. The difficulty is that because of the damage to her liver, her blood clotting functions are also abnormal, and under those conditions it is impossible to do a biopsy. Catch 22.
She is again very depressed at her inability to do anything because of her physical condition, and as always frustrated by the ephemeral nature of all progress that she seems to make. It is very hard for us to do anything for her, which is heartbreaking for us. But we still hope that things will improve, if we figure out the causes of her present condition.
We are starting to make arrangements to have someone come in to be with her two mornings a week, so that we will both be free those days to work or do other things that need to get done; Kupat Holim (our HMO) will cover the cost. I just hope we find someone compatible with Timmi - she's not so easy to please as far as people outside the family are concerned. But having started getting out into the outside world again, I see how crucial working is to my morale; I am now mediating two cases and this has had a very positive effect on me. Work and exercise - those are the things that help me most at this point.
Shabbat Shalom to all of you, and if I don't write before then, Shana Tova.
Love,
Sara
October 1, 2005
I’m starting this post on Saturday evening, after Shabbat has gone out. My mood tends to get blue as the Sabbath draws to a close. Not surprisingly, many observant Jews feel sad as this time approaches. It’s never easy to leave behind the peace and pleasures of our weekly day of physical and spiritual rest, and face our re-entry into the rather frantic world of work and day-to-day obligations. For me, this feeling has been intensified over the past several years by the fear that I won’t be able to do what life demands of me. Worse, as I prepare to face the week, I’m haunted by the question whether there’s anything that’s truly worth doing. But my answer is always yes. Meaningful activity – being a mother to my children and a wife to Don, interacting with the others in my life and, now, preparing to enter a profession in which I’ll be able to fulfill the Jewish commandment to “repair the world” – not only keeps me going, but makes life worth living. I thank God every day for giving me meaningful work to do, and the strength with which to do it.
Five years ago, Timmi no longer belonged to any framework of regular activity. Her involvement with her drama group had ended with the group’s grand production (see “The High Point of a Life,” May 2005). She had finished taking those matriculation exams that she could manage for that academic year. Her class had graduated and the girls were starting their military or alternative national service. She was out of the hospital, still feeling awful from the treatment she’s been given, and with no goal to work toward that could distract her from her body’s slow deterioration. And so she entered a vicious downward spiral: as she weakened, she was able to engage in fewer activities, and as her days became emptier, she became still weaker, which meant that she had even less strength to do the things we tried to find to help her fill her time. From time to time, she rallied, and did as much as her body would allow her to do. But as time went by, those times became fewer and farther between.
Timmi had always been extremely active, involved in many areas all at once – music, writing, reading, drawing, joking, acting, interacting with her family and her peers, and so much more – and was always excited about learning new things. Even when she was hospitalized or home-bound due to her leukemia or the treatment for it, she kept as busy as her physical strength allowed. In the hospital we'd rent her a television (a novelty for her, as we've never had a TV at home), for when she was unable to read or talk with whoever was staying with her. When I was with her there, we'd watch together - and Timmi would always have something to say about the cultural and moral values reflected in whatever we were watching. She transformed even the silliest shows into learning opportunities. For example, she used South American telenovellas to start to teach herself Spanish, keeping by her bed a vocabulary list to which she would add new words every time she watched, and would occasionally speak to me in simple (sometimes broken) Spanish. When she was up to it, she played all kinds of games - puppet games with her older sisters, or dress-up, when she'd take a scarf, drape it over her hair and tie it under her chin like the mothers of some of the Arab children in the ward. (This last game reminded me of how when she was little she used to exchange shoes with her friends, and they'd pretend to be each other.) During her second illness, she not only did whatever schoolwork she could, but also started driving lessons and worked a few hours a week for the Israel office of the Anti-Defamation League.
But now, my heart broke slowly as she began to lose interest in the world around her, even in the things she had loved most passionately until then. When we tried playing her favorite records she asked us to stop, saying the noise disturbed her. She could no longer write stories or poetry, of course, nor could she even concentrate on movies or television. We bought her a new kitten, knowing how much she loved animals, and remembering how she used to spend hours playing with our first cat, Snow, who used to seek her out in order to sleep on her lap, or with her in bed. (She used to hold long conversations with the cat: “Snow,” she would croon. “Meow,” Snow would answer. “Snow,” she would repeat; “Meow,” Snow would again reply. The dialogue would go on like that: “Snow” “Meow;” “Snow,” “Meow;” until it would end with a long “Snooooooow,” and a final “Meooooooow.”) But even the new kitten failed to keep Timmi’s attention for more than a minute or two, and soon after it arrived, Timmi entered the hospital for the last time.
I’ve mentioned more than once that after Timmi died I went through a long period in which I also had no strength to do any but the most urgent tasks, and nothing seemed worth the effort. Like Timmi, I'd been a "doer" to the point of hyperactivity. I had my first baby during my second year in law school, my second a week after graduating, my third right after finishing a clerkship on the Federal Court of Appeals in San Fransisco - and moved to Israel a month later. Right after learning Hebrew, I started courses at Hebrew University toward a Masters degree in Jewish law (which I never completed because financial pressures required that I enter the work force). From there I went on to a very demanding professional life, having four more children along the way. So during the long stretch of lethargy I experienced after Timmi died, it felt as if I were not really living, or not really living as myself.
Thank God, I’ve regained much of my strength, and started on a very meaningful path in anticipation of a new career as a social worker. But I still tend to worry abount my energy level. While I was in New York for my studies this summer, I felt very anxious at first – would I really have the energy to complete the work for six courses in seven weeks? True, back in the old days I’d worked at a full-time-plus career while raising (together with Don) seven children. But those times were long gone; before leaving for New York I’d been barely able to work five hours a day at my job, and often had to leave non-urgent household business unattended to. How would I handle six hours a day of classes plus homework and two papers every week?
As the summer went by and I got into the routine, though, I discovered that I really was capable of doing what was required of me - and the very fact of being actively engaged in such a maningful and intensive project energized me. In a sense, I reversed the cycle that had held Timmi in its grip the last few months of her life: the more I did, the more energy I had, and the more strength I had the more I did. In fact, I've returned from New York with a sense that my life has finally become unstuck, and feeling – for the first time in many years – truly optimistic about the future.
Still, there are times when the old lethargy and sense of hopelessness take over. At those times, I get a glimpse of how Timmi must have felt during those last months: without meaningful activity, life itself feels meaningless. How incredibly difficult this must have been for Timmi, who had always been full of boundless energy, enthusiasm and plans for the future, and who had sought meaning in all aspects of her life and her world! The thought is really too painful for me to bear for long.
When I begin to feel weighed down by the memory of how Timmi’s life force slowly drained away, or by my own lack of strength or sense of meaninglessness, I pull myself out of it by finding something significant – however small – to do. This past Shabbat, for example, the blue feeling started to come over me as I was sitting with Shari, sharing the traditional Sabbath “third meal” in the late afternoon. Suddenly Shari said, “Let’s sing!” What a great idea, I said – and we agreed that it’s nearly always a great idea to sing. So we sang together the two songs with which Jews have traditionally bade the Sabbath farewell – Psalm 23 (The Lord is my Shepherd), and “Yedid Nefesh” (Friend of My Soul), a kind of love song to God. By the time we finished, the blues had left me, and I once again felt ready to use the strength I’d gathered over Shabbat to go out into the world and do what I must as a believing Jew, a mother, a wife, a student, and a friend.
I’m finishing this post just before the beginning of Rosh HaShana, the Jewish New Year. At this time of reflection and renewal, my wish is that God will give all of us the strength and the wisdom to fill our own lives with meaning, and help us to do the same for those around us.
Shana Tova – I wish all my readers a happy, healthy and sweet year.
Monday, September 26, 2005
No News and Good News
August 17, 2000
There is not that much to report. Timmi returned to the hospital on Sunday for her release, and came home "finally" that evening; on Tuesday we were back in day care (routine). At home she has been sleeping a large part of the time, and when awake usually feels quite weak. She again can't keep much of anything down, which is a problem as she needs to take many pills every day (she gets her fluids and nutrition intravenously).
A positive take on all this is that Timmi's nausea, and perhaps her weakness as well, may very well be due to the poor present functioning of her liver, which in turn may be due to a certain level of GVH. And as we all know, GVH, while it can be extremely uncomfortable, is what we hope will put Timmi back into remission from her cancer. We don't know what is happening, but it is not unreasonable to believe and hope that she does have some GVH and that it may work against the cancer.
I have been in rather poor shape; I got some kind of respiratory virus last Friday morning (probably not coincidentally, the day after taking Timmi home), which then turned into asthma, and I am still not fully over it. I am of course very tired, and I must say that my stress level has been lower. I am starting to feel somewhat better, though, and hope to be back to "normal" within the next few days. The end of the summer break, if there is no school strike at its end, will also help.
Shabbat Shalom to all,
Sara
August 24, 2000
This week has been stable for Timmi, for better and for worse. For better, in that she still has no (or very little) pain despite continuing to reduce her dose of narcotic painkillers. She will continue taking the anti-inflammatory medicine that helped her so much when she was still hospitalized, as she does has quite a severe inflammation, probably in her joints, and possibly as a result of some level of GVH. Her blood tests are to a degree compatible with some GVH, so we are continuing to hope.
For worse, though, in that she still sleeps most of the time and feels quite awful when she is awake; she feels very weak and can hardly keep anything down. In addition, for the past few days she has been very depressed; nothing appeals to her, and she doesn't feel she has the strength to do anything - not even listen to music or watch a video. We hope that the depression is due to the reduction of her painkiller dosage, and not to something more long-term (though God knows she certainly has enough to be depressed about).
It is very painful to see the depression, as there is truly nothing we can do for her when she gets like this, other than be with her, and being with her does not, on the surface at least, seem to do much of anything (of course it would be much worse if she had no one to be with her). At least with physical pain, we can give her enough morphine to put her to sleep so she doesn't feel it. With depression, there is no such "easy" (ha!) way out. All we can do now is hope and pray it will be temporary.
I am for the most part feeling physically better than I did last week, though I am still quite exhausted. I hope within the next few days to be able to get back to fairly regular exercise.
Shabbat Shalom to all of you.
Love,
Sara
I just went out to the living room after sending out tonight's update, and found Timmi awake and in quite a good mood (though still down physically). This is the first time in several days that she is feeling this good emotionally, and I wanted to share it with you. Let's hope and pray it lasts!
September 26, 2005
It’s becoming harder to get myself to sit down and write this blog; you may have noticed that for some time I’ve been posting entries more seldom than I did at first. The reason is simple – it’s getting more difficult for me to reread, to process and to write about our life five years ago, as Timmi’s last chance came and went, and as she began her slow and gentle journey away from this world. It’s especially difficult for me to look back at that period through the prism of my present life, as I’ve been trying to do in this memoir and memorial. Comparing the two is sometimes just too painful.
Five years ago, I spent my time following the tiny day-to-day changes in Timmi’s condition and mood as one usually follows the news during a war or a hurricane; those changes were the most momentous events of Timmi’s life (and mine) at that time. If there were "big" things happening out there, we just weren't tuned in to them. In contrast, nowadays it seems as if every day brings news of very important life-events: my friends’ children are getting married and having babies; my own adult children are creating and deepening relationships with significant others and making their career choices. The young men and women of Timmi’s generation are now setting out on dynamic and exciting journeys that will shape their lives for decades to come. Part of me is joyful for and with them as they embark on their new paths. But part of me finds it very hard to watch these life-changes, knowing that Timmi will never experience them.
Tomorrow evening, I’ll attend the third wedding that’s taking place over a period of three weeks, of girls the age Timmi would be if she were alive today. The Shabbat before the most recent wedding, Talila, the young bride-to-be (the daughter of a very good friend) had a pre-wedding ceremony at my synagogue. I smiled with pleasure as Talila’s friends, relatives and then the bride herself were called up one after the other to the Torah. Afterwards, all of us threw candies, clapped, sang and danced around the Torah scroll. But as the women danced and sang, I suddenly had a picture of Timmi as she would look today - as I’d seen her in my dream (see “Dreaming,” August 2005) - reading from the Torah and singing and dancing with her friends. Tears of sorrow for my beautiful, lost daughter, mixed with my tears of happiness for Talila, began to work their way up from the pit of my stomach, spread like a burning liquid through my chest, and spilled out my eyes. When Talila’s mother offered me the honor of carrying the Torah scroll back to the Holy Ark, I was unable to accept, because my legs were buckling under me. It took me more than an hour to stop trembling.
Talila's wedding, like all religious Jewish weddings, was joyful beyond words. Have all of you out there been to a real Jewish wedding? The bridegroom, and then the bride, are accompanied to the wedding canopy not only by their parents, but also by their young friends, who sing, dance and clap to the accompaniment of musical instruments (traditionally clarinets and other woodwinds). The guests also sing and clap along to some parts of the ceremony itself. At the ceremony’s conclusion, the groom breaks the traditional glass, as a symbol of mourning and memory of the destruction of ancient Jerusalem.
The music then starts up again and the crowd parts as the new couple leaves the canopy to spend a short time alone before rejoining their guests for the festive meal. As the couple returns, the music and dancing gain in momentum until things get almost wild. The women dance with the bride and around the bride, the men dance with the groom and around the groom, and both are raised above the crowd on chairs and “dance” with each other, each holding the end of a handkerchief. As the atmosphere grows in hilarity, the guests dance, sing and perform tricks to amuse the young couple. When everyone is exhausted, the meal is served, after which everyone gets up for yet more dancing.
It’s a mitzvah to do all one can to make the bride and groom happy at their wedding, and joining in the dancing is part of this. Talila and her groom were radiant, and their joy contagious. Also, I love to dance. So it was with great pleasure that I got up to join the festivities. Around Talila was an inner circle of girls bursting with youth and energy, leaping and dancing passionately; wider circles of older women danced, somewhat more sedately, around them. As I joined one of the outer circles, I couldn’t help but share in the general elation at the young couple's happiness.
But then I was struck once again by a fleeting vision of a 23-year-old Timmi, dancing and singing her heart out together with these girls. And then another vision, even more ephemeral, passed before me: that of Timmi as she might have danced at her own wedding.
After that, I danced like a split personality – one Sara happy and grateful to have the privilege of taking part here and now in this lovely wedding, and the other Sara mourning the wedding that will never be. I danced a crazy person’s dance: two steps to your right – joy, two steps to your left – grief; right foot – laugh; left foot – sob; right – smile; left – cry. But I kept dancing.
Someone asked me, at the pre-wedding Torah reading, whether I would have come if I’d known that I’d end up crying. I answered, yes, I would: I do not want to run away from the happiness that exists in this world – I want to embrace it. I do not want to spend my life overcome with grief for what will never be. And I'm sure that Timmi herself wouldn't have wanted me to stay away from joyful occasions; to the contrary, when I join in to contribute to the happiness of those who were or might have today been her friends, I feel that in a sense I'm dancing on her behalf. At the same time, I don't want to run away from my deep sadness for Timmi and all she might have become. To do so would mean, in a sense, running from Timmi herself.
So I will continue to attend weddings, birth ceremonies and other celebrations - those of my friends’ children, of my children’s friends, and of other young people who should have been Timmi's peers - and, God willing, of my living children. I will continue to do my best to add my joy to theirs at their good fortune.
But a Jewish groom always breaks a glass under his wedding canopy in order to remind himself and all present that there is no happiness in this world that is not mixed with some sorrow. I myself will never again need this reminder; because I'll never again have news of any kind of Timmi’s life, my gladness at others’ good news will forever be tinged with sadness, and with more than a drop of longing.
There is not that much to report. Timmi returned to the hospital on Sunday for her release, and came home "finally" that evening; on Tuesday we were back in day care (routine). At home she has been sleeping a large part of the time, and when awake usually feels quite weak. She again can't keep much of anything down, which is a problem as she needs to take many pills every day (she gets her fluids and nutrition intravenously).
A positive take on all this is that Timmi's nausea, and perhaps her weakness as well, may very well be due to the poor present functioning of her liver, which in turn may be due to a certain level of GVH. And as we all know, GVH, while it can be extremely uncomfortable, is what we hope will put Timmi back into remission from her cancer. We don't know what is happening, but it is not unreasonable to believe and hope that she does have some GVH and that it may work against the cancer.
I have been in rather poor shape; I got some kind of respiratory virus last Friday morning (probably not coincidentally, the day after taking Timmi home), which then turned into asthma, and I am still not fully over it. I am of course very tired, and I must say that my stress level has been lower. I am starting to feel somewhat better, though, and hope to be back to "normal" within the next few days. The end of the summer break, if there is no school strike at its end, will also help.
Shabbat Shalom to all,
Sara
August 24, 2000
This week has been stable for Timmi, for better and for worse. For better, in that she still has no (or very little) pain despite continuing to reduce her dose of narcotic painkillers. She will continue taking the anti-inflammatory medicine that helped her so much when she was still hospitalized, as she does has quite a severe inflammation, probably in her joints, and possibly as a result of some level of GVH. Her blood tests are to a degree compatible with some GVH, so we are continuing to hope.
For worse, though, in that she still sleeps most of the time and feels quite awful when she is awake; she feels very weak and can hardly keep anything down. In addition, for the past few days she has been very depressed; nothing appeals to her, and she doesn't feel she has the strength to do anything - not even listen to music or watch a video. We hope that the depression is due to the reduction of her painkiller dosage, and not to something more long-term (though God knows she certainly has enough to be depressed about).
It is very painful to see the depression, as there is truly nothing we can do for her when she gets like this, other than be with her, and being with her does not, on the surface at least, seem to do much of anything (of course it would be much worse if she had no one to be with her). At least with physical pain, we can give her enough morphine to put her to sleep so she doesn't feel it. With depression, there is no such "easy" (ha!) way out. All we can do now is hope and pray it will be temporary.
I am for the most part feeling physically better than I did last week, though I am still quite exhausted. I hope within the next few days to be able to get back to fairly regular exercise.
Shabbat Shalom to all of you.
Love,
Sara
I just went out to the living room after sending out tonight's update, and found Timmi awake and in quite a good mood (though still down physically). This is the first time in several days that she is feeling this good emotionally, and I wanted to share it with you. Let's hope and pray it lasts!
September 26, 2005
It’s becoming harder to get myself to sit down and write this blog; you may have noticed that for some time I’ve been posting entries more seldom than I did at first. The reason is simple – it’s getting more difficult for me to reread, to process and to write about our life five years ago, as Timmi’s last chance came and went, and as she began her slow and gentle journey away from this world. It’s especially difficult for me to look back at that period through the prism of my present life, as I’ve been trying to do in this memoir and memorial. Comparing the two is sometimes just too painful.
Five years ago, I spent my time following the tiny day-to-day changes in Timmi’s condition and mood as one usually follows the news during a war or a hurricane; those changes were the most momentous events of Timmi’s life (and mine) at that time. If there were "big" things happening out there, we just weren't tuned in to them. In contrast, nowadays it seems as if every day brings news of very important life-events: my friends’ children are getting married and having babies; my own adult children are creating and deepening relationships with significant others and making their career choices. The young men and women of Timmi’s generation are now setting out on dynamic and exciting journeys that will shape their lives for decades to come. Part of me is joyful for and with them as they embark on their new paths. But part of me finds it very hard to watch these life-changes, knowing that Timmi will never experience them.
Tomorrow evening, I’ll attend the third wedding that’s taking place over a period of three weeks, of girls the age Timmi would be if she were alive today. The Shabbat before the most recent wedding, Talila, the young bride-to-be (the daughter of a very good friend) had a pre-wedding ceremony at my synagogue. I smiled with pleasure as Talila’s friends, relatives and then the bride herself were called up one after the other to the Torah. Afterwards, all of us threw candies, clapped, sang and danced around the Torah scroll. But as the women danced and sang, I suddenly had a picture of Timmi as she would look today - as I’d seen her in my dream (see “Dreaming,” August 2005) - reading from the Torah and singing and dancing with her friends. Tears of sorrow for my beautiful, lost daughter, mixed with my tears of happiness for Talila, began to work their way up from the pit of my stomach, spread like a burning liquid through my chest, and spilled out my eyes. When Talila’s mother offered me the honor of carrying the Torah scroll back to the Holy Ark, I was unable to accept, because my legs were buckling under me. It took me more than an hour to stop trembling.
Talila's wedding, like all religious Jewish weddings, was joyful beyond words. Have all of you out there been to a real Jewish wedding? The bridegroom, and then the bride, are accompanied to the wedding canopy not only by their parents, but also by their young friends, who sing, dance and clap to the accompaniment of musical instruments (traditionally clarinets and other woodwinds). The guests also sing and clap along to some parts of the ceremony itself. At the ceremony’s conclusion, the groom breaks the traditional glass, as a symbol of mourning and memory of the destruction of ancient Jerusalem.
The music then starts up again and the crowd parts as the new couple leaves the canopy to spend a short time alone before rejoining their guests for the festive meal. As the couple returns, the music and dancing gain in momentum until things get almost wild. The women dance with the bride and around the bride, the men dance with the groom and around the groom, and both are raised above the crowd on chairs and “dance” with each other, each holding the end of a handkerchief. As the atmosphere grows in hilarity, the guests dance, sing and perform tricks to amuse the young couple. When everyone is exhausted, the meal is served, after which everyone gets up for yet more dancing.
It’s a mitzvah to do all one can to make the bride and groom happy at their wedding, and joining in the dancing is part of this. Talila and her groom were radiant, and their joy contagious. Also, I love to dance. So it was with great pleasure that I got up to join the festivities. Around Talila was an inner circle of girls bursting with youth and energy, leaping and dancing passionately; wider circles of older women danced, somewhat more sedately, around them. As I joined one of the outer circles, I couldn’t help but share in the general elation at the young couple's happiness.
But then I was struck once again by a fleeting vision of a 23-year-old Timmi, dancing and singing her heart out together with these girls. And then another vision, even more ephemeral, passed before me: that of Timmi as she might have danced at her own wedding.
After that, I danced like a split personality – one Sara happy and grateful to have the privilege of taking part here and now in this lovely wedding, and the other Sara mourning the wedding that will never be. I danced a crazy person’s dance: two steps to your right – joy, two steps to your left – grief; right foot – laugh; left foot – sob; right – smile; left – cry. But I kept dancing.
Someone asked me, at the pre-wedding Torah reading, whether I would have come if I’d known that I’d end up crying. I answered, yes, I would: I do not want to run away from the happiness that exists in this world – I want to embrace it. I do not want to spend my life overcome with grief for what will never be. And I'm sure that Timmi herself wouldn't have wanted me to stay away from joyful occasions; to the contrary, when I join in to contribute to the happiness of those who were or might have today been her friends, I feel that in a sense I'm dancing on her behalf. At the same time, I don't want to run away from my deep sadness for Timmi and all she might have become. To do so would mean, in a sense, running from Timmi herself.
So I will continue to attend weddings, birth ceremonies and other celebrations - those of my friends’ children, of my children’s friends, and of other young people who should have been Timmi's peers - and, God willing, of my living children. I will continue to do my best to add my joy to theirs at their good fortune.
But a Jewish groom always breaks a glass under his wedding canopy in order to remind himself and all present that there is no happiness in this world that is not mixed with some sorrow. I myself will never again need this reminder; because I'll never again have news of any kind of Timmi’s life, my gladness at others’ good news will forever be tinged with sadness, and with more than a drop of longing.
Monday, September 19, 2005
Loving God - A Partial Response
September 19, 2005
About two weeks ago, a reader who uses the name “Needsabetterjob” left the following comment on my post “Choosing Life, Choosing Faith” (the translations and explanations in square brackets are mine):
“I am still amazed at your continued adherence to all the religious minutae. After what you have been through how are you able to love Hashem [God]? I understand that you do, it is just that I know someone else who had a similar ordeal, that he lost his son around age 6-8. He had a very successful business and still does, but he divorced his wife within a year of the tragedy and then shortly after is living with a non-Jewish woman. He will not have anything to do with religion, even to the point if he is needed for a minyan [a quorum of ten, which is needed to pray publicly] he will not agree, he will not be part of a Mizuman [a quorum of three to lead Grace After Meals], etc...That is, he abandoned his closeness to Hashem. I am interested how you have taken an opposite approach to this man.I am asking because while I have not gone through anything remotely like your tragedy, I am having many difficulties in life, and feel often that Hashem is not with me.”
I admit, Needsabetterjob, that you’ve caught me out. I’ve fairly well avoided dealing directly with the question that you and so many others pose: that of my feelings toward a God who created a world in which there is so much suffering – and who doesn’t intervene when the innocent suffer. I’ve felt that this question is too big for me, and have approached it only obliquely in my posts. I’ve even wondered whether I would really dare tackle it by the time my blog is due to end (in January 2006, five years after Timmi’s death). But now that you’ve asked, I owe you – and perhaps myself – an articulate answer.
I’ve always believed that innocent suffering is THE theological problem in this world. My question, though, has never been, “Why am I suffering?” or why any particular person suffers, but rather has always been, “Why does any blameless person suffer?” In a sense, what my question really boils down to is “Why did God create an imperfect world?” I have no answer to this question, of course, and never will – certainly not in this life. And I see no point in expecting to understand something so deep and fundamental, or becoming angry that I can’t. Already in ancient times, the writer of the Book of Job saw any human attempt to understand the paradox of a just God allowing the innocent to suffer as futile: "It is hidden from the eyes of all the living... God understands the way to it, and He knows its source." Since that time, many minds much greater than mine have grappled with this question, and have not come up with any truly satisfactory solution.
Still, I do believe that I can respond – in part, at least – to the more intimate and personal question of how I can continue to love God even after what my family and I have been through.
Losing faith in God because I suffer would mean presupposing that if I and those I love lead a good life, evil will not befall us. I’m sure this is what your friend is feeling – why should I have anything to do with a God who didn't keep up His end of the bargain, and allowed my blameless child to suffer and die? But given that my basic theological question is “Why anyone?” rather than “Why me?”, my own expectation (if I had one), would be slightly different – I would believe that God has promised humankind that innocent people generally will never suffer, or will never suffer unjustly. If that were my basic belief, though, I would have lost my faith as soon as I opened my eyes and looked around me at this world, in which innocent people – including millions of blameless children – have suffered and died since the beginning of human time.
Yes, I chose, and continue to choose, to be religiously observant despite this enormous philosophical difficulty. Why? Because loving God gives me what I need to survive emotionally in this cruel world; it keeps me from bitterness, cynicism and despair. From the Torah I learn that what I do every day matters to God. No matter what is happening in my life at any particular time, there is work for me to do in the world. In return for doing that work, God has promised me that He will give me the strength to go on: To go on living the life that He has mapped out for me in the Torah as it has been passed down through the centuries. Especially, to go on performing acts of lovingkindness, and raising my children to be the moral, compassionate people they have become, even after our devastating loss. (I find it very inspiring that Judaism requires even the poorest beggar to give a tenth of what he receives to charity.) In return for continuing to engage in those acts of kindness, I receive the love of those around me – which is, I believe, a reflection of God’s love. And God’s love gives me the resilience, as my friend Alan Busch has said (in his comment to my post “Knowing and Not Knowing”), to “glare at the face of adversity and assert: 'You will not get the better of me!'”
I don’t claim to have given here a fully adequate answer to the most difficult theological question ever posed. But I think that my very partial answer does explain why I persevere in Jewish observance - which I admit might well seem illogical or even preposterous to a person whose inner experience has been different from mine. As for the even more intimate question of loving God, my response - the only response I can give - is that I love God because I believe that the loving is mutual, and because I cannot imagine living in this world without that love.
About two weeks ago, a reader who uses the name “Needsabetterjob” left the following comment on my post “Choosing Life, Choosing Faith” (the translations and explanations in square brackets are mine):
“I am still amazed at your continued adherence to all the religious minutae. After what you have been through how are you able to love Hashem [God]? I understand that you do, it is just that I know someone else who had a similar ordeal, that he lost his son around age 6-8. He had a very successful business and still does, but he divorced his wife within a year of the tragedy and then shortly after is living with a non-Jewish woman. He will not have anything to do with religion, even to the point if he is needed for a minyan [a quorum of ten, which is needed to pray publicly] he will not agree, he will not be part of a Mizuman [a quorum of three to lead Grace After Meals], etc...That is, he abandoned his closeness to Hashem. I am interested how you have taken an opposite approach to this man.I am asking because while I have not gone through anything remotely like your tragedy, I am having many difficulties in life, and feel often that Hashem is not with me.”
I admit, Needsabetterjob, that you’ve caught me out. I’ve fairly well avoided dealing directly with the question that you and so many others pose: that of my feelings toward a God who created a world in which there is so much suffering – and who doesn’t intervene when the innocent suffer. I’ve felt that this question is too big for me, and have approached it only obliquely in my posts. I’ve even wondered whether I would really dare tackle it by the time my blog is due to end (in January 2006, five years after Timmi’s death). But now that you’ve asked, I owe you – and perhaps myself – an articulate answer.
I’ve always believed that innocent suffering is THE theological problem in this world. My question, though, has never been, “Why am I suffering?” or why any particular person suffers, but rather has always been, “Why does any blameless person suffer?” In a sense, what my question really boils down to is “Why did God create an imperfect world?” I have no answer to this question, of course, and never will – certainly not in this life. And I see no point in expecting to understand something so deep and fundamental, or becoming angry that I can’t. Already in ancient times, the writer of the Book of Job saw any human attempt to understand the paradox of a just God allowing the innocent to suffer as futile: "It is hidden from the eyes of all the living... God understands the way to it, and He knows its source." Since that time, many minds much greater than mine have grappled with this question, and have not come up with any truly satisfactory solution.
Still, I do believe that I can respond – in part, at least – to the more intimate and personal question of how I can continue to love God even after what my family and I have been through.
Losing faith in God because I suffer would mean presupposing that if I and those I love lead a good life, evil will not befall us. I’m sure this is what your friend is feeling – why should I have anything to do with a God who didn't keep up His end of the bargain, and allowed my blameless child to suffer and die? But given that my basic theological question is “Why anyone?” rather than “Why me?”, my own expectation (if I had one), would be slightly different – I would believe that God has promised humankind that innocent people generally will never suffer, or will never suffer unjustly. If that were my basic belief, though, I would have lost my faith as soon as I opened my eyes and looked around me at this world, in which innocent people – including millions of blameless children – have suffered and died since the beginning of human time.
Yes, I chose, and continue to choose, to be religiously observant despite this enormous philosophical difficulty. Why? Because loving God gives me what I need to survive emotionally in this cruel world; it keeps me from bitterness, cynicism and despair. From the Torah I learn that what I do every day matters to God. No matter what is happening in my life at any particular time, there is work for me to do in the world. In return for doing that work, God has promised me that He will give me the strength to go on: To go on living the life that He has mapped out for me in the Torah as it has been passed down through the centuries. Especially, to go on performing acts of lovingkindness, and raising my children to be the moral, compassionate people they have become, even after our devastating loss. (I find it very inspiring that Judaism requires even the poorest beggar to give a tenth of what he receives to charity.) In return for continuing to engage in those acts of kindness, I receive the love of those around me – which is, I believe, a reflection of God’s love. And God’s love gives me the resilience, as my friend Alan Busch has said (in his comment to my post “Knowing and Not Knowing”), to “glare at the face of adversity and assert: 'You will not get the better of me!'”
I don’t claim to have given here a fully adequate answer to the most difficult theological question ever posed. But I think that my very partial answer does explain why I persevere in Jewish observance - which I admit might well seem illogical or even preposterous to a person whose inner experience has been different from mine. As for the even more intimate question of loving God, my response - the only response I can give - is that I love God because I believe that the loving is mutual, and because I cannot imagine living in this world without that love.
Thursday, September 15, 2005
Anyone Can Comment
I've changed my blog's settings so that as of now, anyone (except a spammer) can add a comment to any of my posts, even people who haven't registered with Blogspot. You're all welcome to write your thoughts or reactions, by clicking on the "Comments" link at the end of the relevant post. I'll be very happy to hear from you.
Sara
Sara
Sunday, September 11, 2005
Knowing and Not Knowing
August 10, 2000
Well, as they say, I have good news and bad news.
The good news is that I brought Timmi home from the hospital today, after five weeks (minus those 3-4 days in between). Her immediate condition is somewhat improved; she can drink pretty much normally, and can eat a bit (fruit so far). A better solution has also been found for her pain - she's back to patches, and is also now taking Mesulid, an anti-inflammatory medication that works especially well on bones and joints. She still sleeps much of the time, though, so in the coming days we will explore the possibility of reducing the dose of her narcotics and/or the anti-anxiety drug that she is still taking. In addition, there are some weak indications that she may now have a certain degree of GVH, so it is possible that at least some of her pain is from GVH rather than from tumors.
The bad news, however, is that because it is possible (though far from certain) that she does have some GVH, it is too risky to give her additional T-cells at this time (and for so long as there is any indication, weak as it may be, of GVH). So if she does not have GVH, or if she does not have a level of GVH that is effective against her cancer, there is nothing more to do to fight the tumors. In other words, we all hope that what has been done so far will be effective against the cancer. If it is not, though, there is nothing more to be done. And because the signs of GVH are so weak, it is quite possible that within a short time the tumors will start growing again. And if that happens, it is not clear that there will be anything to do other than relieve her pain.
I'm sure you can imagine how this news has affected Don and me. We are trying, now, to focus on the hope that the immunotherapy she received a month ago is indeed starting to have the desired effect, and on the day-to-day issues of keeping her as comfortable and happy as possible, and dealing with our not inconsiderable family dynamics.
I have one request of you all. The emails you send are very welcome, and through them I feel your love and support, which is very important to me. However, I am often not up to going into these things in person; I may want to get away from the situation for a little while, or I may just be too tired or "down" to talk about it. Therefore, when you see me please don't broach the subject unless I bring it up myself and seem to want to go into detail. The same goes, of course, for Don. Of course, that doesn't mean "avoid us", but follow our lead as to whether and how much we want to discuss the medical situation.
Shabbat Shalom to all.
Love, Sara
September 10, 2005
What does it really mean to know something? Clearly, there are many levels of knowing, and many choices as to how to react to what knowledge we have. Sometimes, what we believe we know turns out to be false - a product of wishful thinking, or of deep anxiety. And sometimes we know a thing that is so painful, so difficult to hold in our consciousness, that we repress our knowledge and pretend to ourselves that we are in fact blissfully ignorant. My family and I experienced both kinds of self-deception while Timmi was ill, but especially the willful suppression of what we knew - dwelling in what a close friend whose wife is suffering from relapsed breast cancer refers to as the "Fool's Paradise." During the past several weeks, though, we've been struggling with the opposite tendency, as Don has suffered intense pain whose origin has not yet been definitively diagnosed. I’m doing my best not to let my anxiety manifest itself as false “knowledge,” and to wait patiently until I can safely separate fact from fear.
Five years ago, Timmi underwent a highly experimental treatment that we were told was the last chance to save her life. This was almost the last stage of a process that had begun when Timmi’s symptoms (mostly strong pain) first appeared. Over several months, as these initial symptoms worsened and as routine tests came back negative, we began to understand that something was seriously wrong. My imagination began to run wild as we were told, again and again, “We haven’t yet come up with a diagnosis, but whatever it is, it’s very rare.” Could it be an emerging virus, just waiting to be discovered like Legionnaires’ Disease or AIDS or something even worse?
When Timmi’s leukemia was finally diagnosed, I was almost relieved. After all, we were told that childhood leukemia has a 90% cure rate. That wonderful number (90 percent!) gave all of us the hope and optimism we needed to help Timmi get through the successive rounds of chemo, the transplant and the post-transplant treatments that she needed to put her illness behind her forever. Timmi herself told us many times that she had no doubt whatsoever that she’d defeat the cancer. Yes, somewhere inside we knew that she could be on the wrong side of those statistics. But we pushed that knowledge out of our consciousness. We knew, but we didn’t really know.
Four years after Timmi’s first symptoms appeared, she again began to suffer from unexplained pain. By that point, her tests had been negative for more than three years. This meant (we’d been told) that her chance of relapsing was the same as any healthy child’s of becoming ill with leukemia in the first place – in other words, that she’d been “cured.” By then, we’d taught ourselves not to assume that every pain meant a return of the cancer, so we heavily downplayed that possibility. Our attitude was shared by the various doctors to whom we brought her, who attributed her problems to normal adolescent development. When the pain spread, we contacted Timmi’s oncologists, who were also highly skeptical of the possibility of a relapse; it seems that even childhood cancer doctors don’t want to believe that a child really has cancer. However, they reluctantly agreed to order various tests and scans. (As I was sitting with Timmi waiting for her CT scan, she asked why we were there. When I told her the scan was being done “to rule out the possibility that the cancer has returned,” she looked at me incredulously and said, “You must be joking.”)
As time went by and successive tests came closer to indicating a relapse, Don and I had opposite reactions. I called the oncologist every day, and asked it there was yet any definite diagnosis; with each piece of news it became more difficult to repress what I’d really known inside since the pain had first returned – that this time, the pain meant a relapse. Don, on the other had, didn’t want to know anything until the final word came; why hold such monstrous thoughts in our consciousness so long as we could avoid them? This was a very tense time for us; I couldn’t do without knowing what there was to be known at any given time, but my obsession with hearing partial test results put Don in a place where he didn’t want to be. (Of course, hearing the final diagnosis was infinitely worse.)
Quite soon after Timmi's relapse was confirmed, Don and I attended a seminar at which we learned that as yet there had not been a single case in which a child – or adult, for that matter – had ultimately survived a relapse following a bone marrow transplant. In other words, there was no magic cure rate to hold on to, only a history of failure. Still, I managed to push this new piece of knowledge out of my mind. Instead, I concentrated on the hope that the grim statistics wouldn’t apply to Timmi. After all, new treatments were being developed and tested all the time; the trick was to survive long enough to try the next promising approach. Perhaps we could go on like this forever, every so often trying a new treatment that would keep her alive at least until the next came along? Perhaps Timmi would even be written up as a success story for a new approach? Perhaps a miracle would occur…?
But as the cancer returned and gained ground after each treatment we tried – first a different kind of chemo, then a second transplant, then immunotherapy, then that final, last-chance experiment – it became harder to push away the knowledge that it really might happen, that Timmi might actually die. I staved off that horrifying thought by repeating to myself, and to anyone who asked: “We hope this latest treatment will work… we pray she’ll respond this time… we’ve been told there’s a chance…” It was only this mantra that kept me going during those last months, as I held on for dear life to any small sign of progress.
After Timmi left this world, of course, I could no longer play these games with myself. The stark, raw fact of her death lay in wait for me and all my family as we awoke every morning, jumped out at us from behind every corner as we went through the day, and got into bed with us every night. And now we had learned that not knowing a thing doesn’t prevent it from being real.
So we went to the opposite extreme; we became a family of hypochondriacs. Each time one of my older daughters had a backache, she was immediately convinced it was leukemia. In every new beauty mark on one of the younger children, I saw skin cancer. Any ache in a joint or a bone sent me running for a bone scan; a persistent headache could only be a sign of the worst. It's even happened that family members have “known” that their pain was caused by cancer – and accepted the “fact” that their days were numbered – before getting final (negative) test results.
Although we’ve calmed down somewhat as time has gone by, difficult and undiagnosed medical situations still evoke a dread that we sometimes experience as "knowledge" that the inevitable has finally happened, that our fate has finally caught up with us. So it’s been for the past several weeks; Don has been suffering intractable pain that is most likely due to a badly slipped disc, but we still need to confirm the diagnosis with an MRI (“to rule out other pathologies,” in the words of the CT scan report). We’ve been told that because there are no clinical indications (other than pain) of those dreaded “other pathologies,” chances are overwhelming that Don’s problem is orthopedic and nothing more. The trouble is, I’ve heard too many times before that “all the tests are normal,” and about statistical probabilities being on our side.
This time, I’m working very hard to keep recognizing my dread as fear and nothing else. I remind myself that I can’t possibly know what the scan will show; that my feelings are not due to déja vu, but only a reaction to a normal diagnostic process.
Still, until we finish that process, I won't be entirely convinced that I’m not living once again in that Fools' Paradise, refusing to acknowledge a truth that, deep down inside, I really do know.
Well, as they say, I have good news and bad news.
The good news is that I brought Timmi home from the hospital today, after five weeks (minus those 3-4 days in between). Her immediate condition is somewhat improved; she can drink pretty much normally, and can eat a bit (fruit so far). A better solution has also been found for her pain - she's back to patches, and is also now taking Mesulid, an anti-inflammatory medication that works especially well on bones and joints. She still sleeps much of the time, though, so in the coming days we will explore the possibility of reducing the dose of her narcotics and/or the anti-anxiety drug that she is still taking. In addition, there are some weak indications that she may now have a certain degree of GVH, so it is possible that at least some of her pain is from GVH rather than from tumors.
The bad news, however, is that because it is possible (though far from certain) that she does have some GVH, it is too risky to give her additional T-cells at this time (and for so long as there is any indication, weak as it may be, of GVH). So if she does not have GVH, or if she does not have a level of GVH that is effective against her cancer, there is nothing more to do to fight the tumors. In other words, we all hope that what has been done so far will be effective against the cancer. If it is not, though, there is nothing more to be done. And because the signs of GVH are so weak, it is quite possible that within a short time the tumors will start growing again. And if that happens, it is not clear that there will be anything to do other than relieve her pain.
I'm sure you can imagine how this news has affected Don and me. We are trying, now, to focus on the hope that the immunotherapy she received a month ago is indeed starting to have the desired effect, and on the day-to-day issues of keeping her as comfortable and happy as possible, and dealing with our not inconsiderable family dynamics.
I have one request of you all. The emails you send are very welcome, and through them I feel your love and support, which is very important to me. However, I am often not up to going into these things in person; I may want to get away from the situation for a little while, or I may just be too tired or "down" to talk about it. Therefore, when you see me please don't broach the subject unless I bring it up myself and seem to want to go into detail. The same goes, of course, for Don. Of course, that doesn't mean "avoid us", but follow our lead as to whether and how much we want to discuss the medical situation.
Shabbat Shalom to all.
Love, Sara
September 10, 2005
What does it really mean to know something? Clearly, there are many levels of knowing, and many choices as to how to react to what knowledge we have. Sometimes, what we believe we know turns out to be false - a product of wishful thinking, or of deep anxiety. And sometimes we know a thing that is so painful, so difficult to hold in our consciousness, that we repress our knowledge and pretend to ourselves that we are in fact blissfully ignorant. My family and I experienced both kinds of self-deception while Timmi was ill, but especially the willful suppression of what we knew - dwelling in what a close friend whose wife is suffering from relapsed breast cancer refers to as the "Fool's Paradise." During the past several weeks, though, we've been struggling with the opposite tendency, as Don has suffered intense pain whose origin has not yet been definitively diagnosed. I’m doing my best not to let my anxiety manifest itself as false “knowledge,” and to wait patiently until I can safely separate fact from fear.
Five years ago, Timmi underwent a highly experimental treatment that we were told was the last chance to save her life. This was almost the last stage of a process that had begun when Timmi’s symptoms (mostly strong pain) first appeared. Over several months, as these initial symptoms worsened and as routine tests came back negative, we began to understand that something was seriously wrong. My imagination began to run wild as we were told, again and again, “We haven’t yet come up with a diagnosis, but whatever it is, it’s very rare.” Could it be an emerging virus, just waiting to be discovered like Legionnaires’ Disease or AIDS or something even worse?
When Timmi’s leukemia was finally diagnosed, I was almost relieved. After all, we were told that childhood leukemia has a 90% cure rate. That wonderful number (90 percent!) gave all of us the hope and optimism we needed to help Timmi get through the successive rounds of chemo, the transplant and the post-transplant treatments that she needed to put her illness behind her forever. Timmi herself told us many times that she had no doubt whatsoever that she’d defeat the cancer. Yes, somewhere inside we knew that she could be on the wrong side of those statistics. But we pushed that knowledge out of our consciousness. We knew, but we didn’t really know.
Four years after Timmi’s first symptoms appeared, she again began to suffer from unexplained pain. By that point, her tests had been negative for more than three years. This meant (we’d been told) that her chance of relapsing was the same as any healthy child’s of becoming ill with leukemia in the first place – in other words, that she’d been “cured.” By then, we’d taught ourselves not to assume that every pain meant a return of the cancer, so we heavily downplayed that possibility. Our attitude was shared by the various doctors to whom we brought her, who attributed her problems to normal adolescent development. When the pain spread, we contacted Timmi’s oncologists, who were also highly skeptical of the possibility of a relapse; it seems that even childhood cancer doctors don’t want to believe that a child really has cancer. However, they reluctantly agreed to order various tests and scans. (As I was sitting with Timmi waiting for her CT scan, she asked why we were there. When I told her the scan was being done “to rule out the possibility that the cancer has returned,” she looked at me incredulously and said, “You must be joking.”)
As time went by and successive tests came closer to indicating a relapse, Don and I had opposite reactions. I called the oncologist every day, and asked it there was yet any definite diagnosis; with each piece of news it became more difficult to repress what I’d really known inside since the pain had first returned – that this time, the pain meant a relapse. Don, on the other had, didn’t want to know anything until the final word came; why hold such monstrous thoughts in our consciousness so long as we could avoid them? This was a very tense time for us; I couldn’t do without knowing what there was to be known at any given time, but my obsession with hearing partial test results put Don in a place where he didn’t want to be. (Of course, hearing the final diagnosis was infinitely worse.)
Quite soon after Timmi's relapse was confirmed, Don and I attended a seminar at which we learned that as yet there had not been a single case in which a child – or adult, for that matter – had ultimately survived a relapse following a bone marrow transplant. In other words, there was no magic cure rate to hold on to, only a history of failure. Still, I managed to push this new piece of knowledge out of my mind. Instead, I concentrated on the hope that the grim statistics wouldn’t apply to Timmi. After all, new treatments were being developed and tested all the time; the trick was to survive long enough to try the next promising approach. Perhaps we could go on like this forever, every so often trying a new treatment that would keep her alive at least until the next came along? Perhaps Timmi would even be written up as a success story for a new approach? Perhaps a miracle would occur…?
But as the cancer returned and gained ground after each treatment we tried – first a different kind of chemo, then a second transplant, then immunotherapy, then that final, last-chance experiment – it became harder to push away the knowledge that it really might happen, that Timmi might actually die. I staved off that horrifying thought by repeating to myself, and to anyone who asked: “We hope this latest treatment will work… we pray she’ll respond this time… we’ve been told there’s a chance…” It was only this mantra that kept me going during those last months, as I held on for dear life to any small sign of progress.
After Timmi left this world, of course, I could no longer play these games with myself. The stark, raw fact of her death lay in wait for me and all my family as we awoke every morning, jumped out at us from behind every corner as we went through the day, and got into bed with us every night. And now we had learned that not knowing a thing doesn’t prevent it from being real.
So we went to the opposite extreme; we became a family of hypochondriacs. Each time one of my older daughters had a backache, she was immediately convinced it was leukemia. In every new beauty mark on one of the younger children, I saw skin cancer. Any ache in a joint or a bone sent me running for a bone scan; a persistent headache could only be a sign of the worst. It's even happened that family members have “known” that their pain was caused by cancer – and accepted the “fact” that their days were numbered – before getting final (negative) test results.
Although we’ve calmed down somewhat as time has gone by, difficult and undiagnosed medical situations still evoke a dread that we sometimes experience as "knowledge" that the inevitable has finally happened, that our fate has finally caught up with us. So it’s been for the past several weeks; Don has been suffering intractable pain that is most likely due to a badly slipped disc, but we still need to confirm the diagnosis with an MRI (“to rule out other pathologies,” in the words of the CT scan report). We’ve been told that because there are no clinical indications (other than pain) of those dreaded “other pathologies,” chances are overwhelming that Don’s problem is orthopedic and nothing more. The trouble is, I’ve heard too many times before that “all the tests are normal,” and about statistical probabilities being on our side.
This time, I’m working very hard to keep recognizing my dread as fear and nothing else. I remind myself that I can’t possibly know what the scan will show; that my feelings are not due to déja vu, but only a reaction to a normal diagnostic process.
Still, until we finish that process, I won't be entirely convinced that I’m not living once again in that Fools' Paradise, refusing to acknowledge a truth that, deep down inside, I really do know.
Saturday, August 27, 2005
Dreaming
August 4, 2000
We had another difficult week, although the situation started getting easier toward the end of the week. Timmi slept more or less for 36 hours from last Friday morning to Motzei Shabbat; this was quite hard on Don. At the beginning of the week she also slept through most days, which was in turn hard on me. However, I got a break on Wednesday when Don stayed with Timmi during the day, and came back Thursday to find her feeling considerably better. On Wednesday she stopped getting morphine continuously intravenously, and switched back to the pain patches that she had used before this whole thing started (she can still give herself bursts of IV morphine if she has a particular pain). This apparently was a very good thing, as Thursday morning I came and found her more awake than she had been for the last four weeks, in quite a good mood. She stayed awake for several hours, and was relatively active, talking to people and watching TV. Her pain was somewhat diminished, too, which of course is very good. She also no longer has fever.
Her stomach still hurts when she drinks, though, and she can't keep down more than a small amount of liquid at a time; eating is still out of the question. So she is still not able to leave the hospital.
Another reason for staying in the hospital is that the doctors want to continue testing her blood daily, in order to determine whether GVH is starting, as some blood tests seem to indicate that it may be. By Monday they will make a decision as to whether to leave things as they are, if it seems she is indeed starting GVH, or whether to do another course of (milder this time) chemotherapy and give her another portion of T-cells, if it seems there is no, or not enough, GVH. We certainly hope the GVH is starting, and that it will start doing its job soon.
So anyway, it seems she'll be in for at least another few days.
Shabbat Shalom to all.
Love,
Sara
August 24, 2005
A few nights ago, I saw Timmi in a dream for the first time since she died. In my dream, I was sitting in the living room, facing the window and concentrating on something (I believe it was a book), when I heard the door open. “Hi,” I called out without looking up. “Hi,” said an already not-so-familiar voice. I turned around, and there she was – not as she had looked as a healthy child or as an adolescent in remission, and not as she had looked when she was sick. She looked like the 23-year-old woman that she would have become had she lived.
I half-woke up at that point, and spent the rest of the night trying to reenter the dream, sometimes succeeding in recapturing the sight of this beautiful young lady who was my daughter. Although in my first dream Timmi was moving, taking a few steps into the house, each time I managed to drift back into light sleep what I saw was her standing there greeting me, a half-smile on her face, her image frozen like the last frame in a film that has been cut off abruptly.
Many bereaved parents describe waking up from dreams of their departed children with an overwhelming and painful sense of loss. For me it wasn’t like that at all. Of course, I felt terribly sad that seeing Timmi had only been a dream, and to be reminded that she is no longer present in the real world. But it also felt good to finally have seen her. Ever since she died, I've longed to see her again – even if only in a dream – and envied others whose children appeared to them in dreams while they slept or in visions while they were awake. I’ve always felt that seeing her even in a dream or a hallucination would be better than nothing.
In my only other dream of Timmi, I spoke to her from a public pay telephone. She was lost, or confused, and asked me to come get her, telling me she was at the platform of a particular subway station. In the dream, I ran and ran until I reached the station, entered it and found the platform. I arrived just in time to see the train pulling out of the station – and it was clear to me that Timmi was on that train. I’d missed her; I’d not even caught a glimpse of her face. The sadness and longing with which that dream filled me for days afterward is difficult to describe.
Don has also had only one dream in which he saw Timmi face to face. The doorbell rang, and when Don opened the door, Timmi entered without saying anything. As he moved toward her, he saw that her eyes were staring straight ahead, almost through him, without seeing him. He embraced her, and they both began to fall, at which point Don woke up. Like me, Don feels that he would rather have seen Timmi in his dream – even without her seeing him – than not to have had the dream at all.
Our children have also dreamt of Timmi, generally more often and in more detail than Don and I have. Each, of course, has her or his own special kind of dreams – and feelings about them. For example, Danny’s dreams of his sister are straightforward – he sees her at home or in some other familiar context, and it feels completely natural; to Danny, these are dreams like any other. Aimee’s dreams, on the other hand, have a magical but natural quality to them. The last time she had a Timmi-dream, Timmi came back to life for four days in honor of Aimee’s birthday; it seemed natural in the dream for this to happen – kind of, “Cool, this is a great present.” She awoke with the same mixture that Don and I felt of happiness to have seen her sister again, and pain that in real life she hadn’t gotten the gift she longs for.
Like Aimee, I want magic. But if you ask me what I desire more than anything, my answer wouldn’t be for Timmi to return to this world, or even to find that she’d never have left it. No, if a genie were to pop out of a bottle today and give me just one wish, I would ask to wake up tomorrow morning to find that all of it – the symptoms and diagnosis, the pain and the painkillers, the hospital and the treatments, the GVH and the non-GVH, the skeletal slenderness and the balloon-like bloating, the despair and the heroism, the waiting and the end – was the dream; that what my family and I long for – irrationally, impossibly, and unattainably, but with every fiber of our being – has been the true reality all along.
We had another difficult week, although the situation started getting easier toward the end of the week. Timmi slept more or less for 36 hours from last Friday morning to Motzei Shabbat; this was quite hard on Don. At the beginning of the week she also slept through most days, which was in turn hard on me. However, I got a break on Wednesday when Don stayed with Timmi during the day, and came back Thursday to find her feeling considerably better. On Wednesday she stopped getting morphine continuously intravenously, and switched back to the pain patches that she had used before this whole thing started (she can still give herself bursts of IV morphine if she has a particular pain). This apparently was a very good thing, as Thursday morning I came and found her more awake than she had been for the last four weeks, in quite a good mood. She stayed awake for several hours, and was relatively active, talking to people and watching TV. Her pain was somewhat diminished, too, which of course is very good. She also no longer has fever.
Her stomach still hurts when she drinks, though, and she can't keep down more than a small amount of liquid at a time; eating is still out of the question. So she is still not able to leave the hospital.
Another reason for staying in the hospital is that the doctors want to continue testing her blood daily, in order to determine whether GVH is starting, as some blood tests seem to indicate that it may be. By Monday they will make a decision as to whether to leave things as they are, if it seems she is indeed starting GVH, or whether to do another course of (milder this time) chemotherapy and give her another portion of T-cells, if it seems there is no, or not enough, GVH. We certainly hope the GVH is starting, and that it will start doing its job soon.
So anyway, it seems she'll be in for at least another few days.
Shabbat Shalom to all.
Love,
Sara
August 24, 2005
A few nights ago, I saw Timmi in a dream for the first time since she died. In my dream, I was sitting in the living room, facing the window and concentrating on something (I believe it was a book), when I heard the door open. “Hi,” I called out without looking up. “Hi,” said an already not-so-familiar voice. I turned around, and there she was – not as she had looked as a healthy child or as an adolescent in remission, and not as she had looked when she was sick. She looked like the 23-year-old woman that she would have become had she lived.
I half-woke up at that point, and spent the rest of the night trying to reenter the dream, sometimes succeeding in recapturing the sight of this beautiful young lady who was my daughter. Although in my first dream Timmi was moving, taking a few steps into the house, each time I managed to drift back into light sleep what I saw was her standing there greeting me, a half-smile on her face, her image frozen like the last frame in a film that has been cut off abruptly.
Many bereaved parents describe waking up from dreams of their departed children with an overwhelming and painful sense of loss. For me it wasn’t like that at all. Of course, I felt terribly sad that seeing Timmi had only been a dream, and to be reminded that she is no longer present in the real world. But it also felt good to finally have seen her. Ever since she died, I've longed to see her again – even if only in a dream – and envied others whose children appeared to them in dreams while they slept or in visions while they were awake. I’ve always felt that seeing her even in a dream or a hallucination would be better than nothing.
In my only other dream of Timmi, I spoke to her from a public pay telephone. She was lost, or confused, and asked me to come get her, telling me she was at the platform of a particular subway station. In the dream, I ran and ran until I reached the station, entered it and found the platform. I arrived just in time to see the train pulling out of the station – and it was clear to me that Timmi was on that train. I’d missed her; I’d not even caught a glimpse of her face. The sadness and longing with which that dream filled me for days afterward is difficult to describe.
Don has also had only one dream in which he saw Timmi face to face. The doorbell rang, and when Don opened the door, Timmi entered without saying anything. As he moved toward her, he saw that her eyes were staring straight ahead, almost through him, without seeing him. He embraced her, and they both began to fall, at which point Don woke up. Like me, Don feels that he would rather have seen Timmi in his dream – even without her seeing him – than not to have had the dream at all.
Our children have also dreamt of Timmi, generally more often and in more detail than Don and I have. Each, of course, has her or his own special kind of dreams – and feelings about them. For example, Danny’s dreams of his sister are straightforward – he sees her at home or in some other familiar context, and it feels completely natural; to Danny, these are dreams like any other. Aimee’s dreams, on the other hand, have a magical but natural quality to them. The last time she had a Timmi-dream, Timmi came back to life for four days in honor of Aimee’s birthday; it seemed natural in the dream for this to happen – kind of, “Cool, this is a great present.” She awoke with the same mixture that Don and I felt of happiness to have seen her sister again, and pain that in real life she hadn’t gotten the gift she longs for.
Like Aimee, I want magic. But if you ask me what I desire more than anything, my answer wouldn’t be for Timmi to return to this world, or even to find that she’d never have left it. No, if a genie were to pop out of a bottle today and give me just one wish, I would ask to wake up tomorrow morning to find that all of it – the symptoms and diagnosis, the pain and the painkillers, the hospital and the treatments, the GVH and the non-GVH, the skeletal slenderness and the balloon-like bloating, the despair and the heroism, the waiting and the end – was the dream; that what my family and I long for – irrationally, impossibly, and unattainably, but with every fiber of our being – has been the true reality all along.
Sunday, August 14, 2005
Choosing Life, Choosing Faith
July 27, 2000
As I predicted in my last update, this past week has been a difficult one. Friday and Shabbat Timmi’s stomach pains got worse, and she developed a strong pain in a new place in her side; the morphine was not really working to control the pain. On Sunday the dose of her morphine was greatly increased, and a new drug, halidol, was added. This brought the pain more or less under control pretty quickly, although for a few days she was either sleeping from the morphine, or hurting. At times distraction by watching television allowed her to be awake and relatively pain-free, but seldom. A CT scan she did at the beginning of the week revealed that the pains, and probably also her fever, were (are) a result of an intestinal inflammation. Therefore, she may not eat and may drink only very small amounts. This, of course, adds to her discomfort.
In the last few days her blood counts rose and they are mostly back to a normal level, which has made her feel generally better. She still has a high fever, however, so will stay in the hospital for the time being.
Timmi still shows no signs of GVH, so she may need to receive more T-cell therapy in the near future. Shari's T-cells will be "harvested" again on Sunday and Monday, and frozen for possible future use, because Shari is traveling to the States on Tuesday for an undefined period.
Except for our three and a half day hiatus at home, we have now been in the hospital for three weeks. Luckily, the ward has, for the past week and a half, been able to arrange for Timmi to be in a room by herself, which is certainly vastly preferable to sharing the room with another family, however nice the people may be. This has made this particular hospitalization significantly more bearable, but still I return each evening feeling as if someone had squeezed all the juice out of me. Now I'll get a break, though, because Don stays in the hospital from Friday morning through Sunday morning, which of course exhausts him, but then I take over the days again and our older daughters take the nights (though soon, with Shari in the States as well as Sheila, that will consist of Lisa only, but she is more than willing to sleep in the hospital and even feels better sleeping there when Timmi is there).
I read an excellent book this week, which was recommended to me by Marion and which I found to be well written, well thought-out and in harmony with my theological, philosophical and psychological view of the world. It is called "When Bad Things Happen to Good People", by Harold S. Kushner, and I highly recommend it to anyone troubled by the inherently problematic nature of the combination of three beliefs/phenomena: the existence of an omnipotent God; the belief that God is good and just; and the unavoidable fact that innocent people suffer.
Shabbat Shalom to all of you, and may we all use Shabbat to recover from all of our various hard work and hardships.
Love,
Sara
August 14, 2005
I would like to warmly thank Deborah Weissman for her learned contribution to this post.
Today is Tisha B’Av, the ninth day of the Hebrew month of Av, when Jews mourn the destruction of our Temple in Jerusalem and our expulsion from our land, in 586 B.C.E and then again in 70 C.E. After each terrible loss, our people questioned whether we could go on, when God Himself seemed to have deserted us. But not only did we survive these traumatic events, but we went on to build new and flourishing communities in the Diaspora. And in our second exile, we adjusted to our new reality by creating a new basis for our faith, one that preserved Judaism and permitted it to continue to develop even in the absence of the Temple service that had been so central to Jewish worship.
After I lost Timmi, I too went through a period of deep despair. But as my people have done throughout the centuries, and as Timmi herself did in the face of indescribable suffering (see my previous post), I have chosen to make what I can of my new reality; in other words, I have chosen life. And although Timmi's death has made excruciatingly apparent to me that God does not always protect the innocent in this world, I have chosen faith.
Psalm 137 expresses beautifully the sense of absolute despair that gripped the Jewish people after we were exiled from our land by the Babylonians in the sixth century B.C.E. The Psalm’s first six verses are well known:
By the waters of Babylon we sat and wept, as we remembered Zion.
On the willows there we hung our harps.
For there our captors demanded of us songs, and our tormentors, mirth: “Sing to us a song of Zion!”
How shall we sing God’s song in a foreign land?
If I forget you, Jerusalem, may my right hand wither!
May my tongue cleave to the roof of my mouth, if I do not remember you, if I do not set Jerusalem above my highest joy!
How could the Children of Israel sing God’s song in a foreign land, where God seemed to have deserted us? And how could I, more than 2,500 years later, sing any song at all, after a loss so crushing and so incomprehensible as the loss of my daughter?
In the immediate aftermath of Timmi’s death, I went numb. I could feel neither joy nor sorrow; I could not even weep like Zion’s exiles. As the truth set in that I had lost her forever, I sank into a depression deeper than any I’ve ever experienced – deeper than any I might have thought possible. I lost the desire to do just about everything, and the ability to do anything other than what was strictly necessary to keep my family going. Many times I felt that I did not even want to go on living. I would never have deserted my children by ending my own life, but the thought of having been left behind in such a cruel world was unbearable. Had God, whom I had thought merciful, deserted me?
But God's command to choose life is too strong, and too central to Jewish consciousness, to allow despair to triumph forever. Through His prophet Jeremiah, God told the exiles in Babylon to rebuild their lives: “Build houses and live in them; plant gardens and eat of their fruits. Take wives and have sons and daughters; take wives for your sons, and give your daughters in marriage, that they may bear sons and daughters; multiply there, and do not decrease” (Jeremiah 29:5-6). God did not wish His people to enter a state of perpetual mourning, which would have caused the Jews to wither away and, ultimately, to disappear from the face of the Earth.
Almost six hundred years later, when the second Temple was destroyed, the Jews who lived in the land of Israel faced a similar choice. They could go the way of the Zealots of Masada, who killed first their children and then themselves rather than accept the reality of loss. However, Rabbi Yoḥanan Ben Zakai, one of the greatest of the Mishnaic Sages, chose a different way. He gathered around him the other surviving religious scholars and set off to found Yavneh, a new community about 30 miles from Jerusalem. Together, these Sages began the process of creating new religious forms that would sustain the Jewish people throughout almost 2,000 years of diaspora – a Judaism not dependent on the existence of a Temple; a song to God which could indeed be sung in a foreign land.
Five years ago, Don and I began to watch helplessly as the end of our own private Temple – the home we had created by bringing seven beautiful children into this world – approached, as Timmi began to slip away from us. When the end came, our family was devastated. But as Jews have been doing for more than 25 centuries, we are now in the process of rebuilding our lives, and of trying to make them as meaningful as we can in the face of our trauma and tragedy. And I, like my ancestors before me, am doing my best to preserve my faith in God, and to continue to sing His song in a world that has become incomprehensible.
Where am I to find the strength to do this? Together with Harold Kushner, I believe that when bad things happen to good people, God provides us with a well of strength upon which we can draw to survive our losses and forge new lives for ourselves. This conception is reflected in the Babylonian Talmud: “Come and see how much the Holy One, Blessed Be He, loves Israel. For in every place to which they were dispersed, [His] Presence [remained] with them. They were dispersed to Egypt – the Presence was with them… They were dispersed to Babylon – the Presence was with them… And even when they will be redeemed in the future, the Presence… will return with them from the Diaspora” (Megillah 29A).
God did not desert the Children of Israel after we were exiled from our land, even though at first we felt to the core of our being that He had done so. To the contrary; God has provided us with the strength to survive despite vicious persecution, and with the inspiration to create vibrant communities, a vast body of scholarly literature, and a dynamic tradition that has enabled us to adapt to each new situation in which we’ve found ourselves.
And I, for myself, choose to believe that God has not deserted me, even though I cannot understand His world and even though I can seldom feel His presence directly. As Jews have done throughout the ages, I continue to believe that He will provide me with the strength and inspiration that I need to create a new and meaningful life for myself even in a cruel and staggeringly unjust world. And I believe that He will give me the love that I need to sustain me, as I continue to choose life.
As I predicted in my last update, this past week has been a difficult one. Friday and Shabbat Timmi’s stomach pains got worse, and she developed a strong pain in a new place in her side; the morphine was not really working to control the pain. On Sunday the dose of her morphine was greatly increased, and a new drug, halidol, was added. This brought the pain more or less under control pretty quickly, although for a few days she was either sleeping from the morphine, or hurting. At times distraction by watching television allowed her to be awake and relatively pain-free, but seldom. A CT scan she did at the beginning of the week revealed that the pains, and probably also her fever, were (are) a result of an intestinal inflammation. Therefore, she may not eat and may drink only very small amounts. This, of course, adds to her discomfort.
In the last few days her blood counts rose and they are mostly back to a normal level, which has made her feel generally better. She still has a high fever, however, so will stay in the hospital for the time being.
Timmi still shows no signs of GVH, so she may need to receive more T-cell therapy in the near future. Shari's T-cells will be "harvested" again on Sunday and Monday, and frozen for possible future use, because Shari is traveling to the States on Tuesday for an undefined period.
Except for our three and a half day hiatus at home, we have now been in the hospital for three weeks. Luckily, the ward has, for the past week and a half, been able to arrange for Timmi to be in a room by herself, which is certainly vastly preferable to sharing the room with another family, however nice the people may be. This has made this particular hospitalization significantly more bearable, but still I return each evening feeling as if someone had squeezed all the juice out of me. Now I'll get a break, though, because Don stays in the hospital from Friday morning through Sunday morning, which of course exhausts him, but then I take over the days again and our older daughters take the nights (though soon, with Shari in the States as well as Sheila, that will consist of Lisa only, but she is more than willing to sleep in the hospital and even feels better sleeping there when Timmi is there).
I read an excellent book this week, which was recommended to me by Marion and which I found to be well written, well thought-out and in harmony with my theological, philosophical and psychological view of the world. It is called "When Bad Things Happen to Good People", by Harold S. Kushner, and I highly recommend it to anyone troubled by the inherently problematic nature of the combination of three beliefs/phenomena: the existence of an omnipotent God; the belief that God is good and just; and the unavoidable fact that innocent people suffer.
Shabbat Shalom to all of you, and may we all use Shabbat to recover from all of our various hard work and hardships.
Love,
Sara
August 14, 2005
I would like to warmly thank Deborah Weissman for her learned contribution to this post.
Today is Tisha B’Av, the ninth day of the Hebrew month of Av, when Jews mourn the destruction of our Temple in Jerusalem and our expulsion from our land, in 586 B.C.E and then again in 70 C.E. After each terrible loss, our people questioned whether we could go on, when God Himself seemed to have deserted us. But not only did we survive these traumatic events, but we went on to build new and flourishing communities in the Diaspora. And in our second exile, we adjusted to our new reality by creating a new basis for our faith, one that preserved Judaism and permitted it to continue to develop even in the absence of the Temple service that had been so central to Jewish worship.
After I lost Timmi, I too went through a period of deep despair. But as my people have done throughout the centuries, and as Timmi herself did in the face of indescribable suffering (see my previous post), I have chosen to make what I can of my new reality; in other words, I have chosen life. And although Timmi's death has made excruciatingly apparent to me that God does not always protect the innocent in this world, I have chosen faith.
Psalm 137 expresses beautifully the sense of absolute despair that gripped the Jewish people after we were exiled from our land by the Babylonians in the sixth century B.C.E. The Psalm’s first six verses are well known:
By the waters of Babylon we sat and wept, as we remembered Zion.
On the willows there we hung our harps.
For there our captors demanded of us songs, and our tormentors, mirth: “Sing to us a song of Zion!”
How shall we sing God’s song in a foreign land?
If I forget you, Jerusalem, may my right hand wither!
May my tongue cleave to the roof of my mouth, if I do not remember you, if I do not set Jerusalem above my highest joy!
How could the Children of Israel sing God’s song in a foreign land, where God seemed to have deserted us? And how could I, more than 2,500 years later, sing any song at all, after a loss so crushing and so incomprehensible as the loss of my daughter?
In the immediate aftermath of Timmi’s death, I went numb. I could feel neither joy nor sorrow; I could not even weep like Zion’s exiles. As the truth set in that I had lost her forever, I sank into a depression deeper than any I’ve ever experienced – deeper than any I might have thought possible. I lost the desire to do just about everything, and the ability to do anything other than what was strictly necessary to keep my family going. Many times I felt that I did not even want to go on living. I would never have deserted my children by ending my own life, but the thought of having been left behind in such a cruel world was unbearable. Had God, whom I had thought merciful, deserted me?
But God's command to choose life is too strong, and too central to Jewish consciousness, to allow despair to triumph forever. Through His prophet Jeremiah, God told the exiles in Babylon to rebuild their lives: “Build houses and live in them; plant gardens and eat of their fruits. Take wives and have sons and daughters; take wives for your sons, and give your daughters in marriage, that they may bear sons and daughters; multiply there, and do not decrease” (Jeremiah 29:5-6). God did not wish His people to enter a state of perpetual mourning, which would have caused the Jews to wither away and, ultimately, to disappear from the face of the Earth.
Almost six hundred years later, when the second Temple was destroyed, the Jews who lived in the land of Israel faced a similar choice. They could go the way of the Zealots of Masada, who killed first their children and then themselves rather than accept the reality of loss. However, Rabbi Yoḥanan Ben Zakai, one of the greatest of the Mishnaic Sages, chose a different way. He gathered around him the other surviving religious scholars and set off to found Yavneh, a new community about 30 miles from Jerusalem. Together, these Sages began the process of creating new religious forms that would sustain the Jewish people throughout almost 2,000 years of diaspora – a Judaism not dependent on the existence of a Temple; a song to God which could indeed be sung in a foreign land.
Five years ago, Don and I began to watch helplessly as the end of our own private Temple – the home we had created by bringing seven beautiful children into this world – approached, as Timmi began to slip away from us. When the end came, our family was devastated. But as Jews have been doing for more than 25 centuries, we are now in the process of rebuilding our lives, and of trying to make them as meaningful as we can in the face of our trauma and tragedy. And I, like my ancestors before me, am doing my best to preserve my faith in God, and to continue to sing His song in a world that has become incomprehensible.
Where am I to find the strength to do this? Together with Harold Kushner, I believe that when bad things happen to good people, God provides us with a well of strength upon which we can draw to survive our losses and forge new lives for ourselves. This conception is reflected in the Babylonian Talmud: “Come and see how much the Holy One, Blessed Be He, loves Israel. For in every place to which they were dispersed, [His] Presence [remained] with them. They were dispersed to Egypt – the Presence was with them… They were dispersed to Babylon – the Presence was with them… And even when they will be redeemed in the future, the Presence… will return with them from the Diaspora” (Megillah 29A).
God did not desert the Children of Israel after we were exiled from our land, even though at first we felt to the core of our being that He had done so. To the contrary; God has provided us with the strength to survive despite vicious persecution, and with the inspiration to create vibrant communities, a vast body of scholarly literature, and a dynamic tradition that has enabled us to adapt to each new situation in which we’ve found ourselves.
And I, for myself, choose to believe that God has not deserted me, even though I cannot understand His world and even though I can seldom feel His presence directly. As Jews have done throughout the ages, I continue to believe that He will provide me with the strength and inspiration that I need to create a new and meaningful life for myself even in a cruel and staggeringly unjust world. And I believe that He will give me the love that I need to sustain me, as I continue to choose life.
Sunday, July 31, 2005
Choosing Life
July 14, 2000
Timmi returned home from the hospital today, after a week's hospitalization. In addition to the treatment that she got for her cancer, she also needed intravenous antibiotics because she developed a fever last Thursday morning; it turned out she had a bacterial infection in her blood as well as pneumonia. For the first few days, in addition to receiving a constant, high dose of morphine for the "breakthrough" pain she was experiencing, she was constantly attached to oxygen and had somewhat worryingly low blood pressure. After several days of antibiotics, however, she could be taken off the oxygen and her blood pressure went up somewhat.
For the first several days she was asleep most of the time from the morphine, waking very briefly once during the day and for a couple of hours at night; when she was awake she needed extra doses of morphine to deal with the pain. Gradually, the pain lessened when she was awake and she could even take a few steps, with support. As the chemotherapy started kicking in, her pain was reduced and so was her dose of morphine, enabling her to be pretty much pain-free when she was awake.
On Wednesday (yesterday) she received the T-cells from Shari that we hope will reverse the present oncological trend. The doctors gave her half of the cells they harvested; if she does not develop GVH within the next three weeks, she will get the other half, with possibly more doses after that.
Once she had received the cells, and because her pain, blood pressure and oxygen level were improved, she could be released. She is now connected to a small "home" morphine pump; we will reduce or increase the flow of morphine as needed. Because of the chemo, there is a pretty good chance that she will be able to mostly or entirely go off the morphine by next week. In addition, we will be giving her intravenous antibiotics at home for the next ten days. Of course, if she gets a fever or if the GVH kicks in seriously, she will return to the hospital.
I am quite exhausted after the past eight days. But it is a real gift to see Timmi out of pain, after the nightmare of last week's breakthrough pain (this is pain that cannot be effectively controlled even with high doses of narcotics). I hope we all never ever have to go through this again. Nor anyone else, for that matter, but of course given the world we live in this last wish is unrealistic.
Shabbat Shalom to all.
Love,
Sara
July 21, 2000
After three difficult days at home, during which Timmi was less and less able to drink or eat, she re-entered the hospital on Monday with extremely low blood counts (this is normal after chemotherapy) as well as some dehydration and serious pain in her stomach. The pain is also apparently a side effect of the chemotherapy. She has also developed a fever (to be expected in light of the low blood count), and is generally feeling quite bad. The stomach pains continue whenever she is awake, and she can't drink more than a small amount at a time.
The good things about the hospitalization are that she gets intravenous fluids, nutrition and morphine, the last of which she controls herself with a pump; she gets a steady background dose but can also add to it if she hurts. This is what she does when the stomach pain gets bad; usually the extra dose puts her to sleep. But if the choice is sleep or pain, sleep is obviously preferable. Unfortunately even the pain experts don't know how to keep her awake and comfortable at this point.
A worrying thing is that she still sometimes has pain in her knees, a sign that the chemotherapy shrunk the tumors but not completely. Therefore, it is possible that she will start a new round of chemo once she has recovered from this one. Also, she will get more T- cells if she does not develop GVH within the next couple of weeks.
We are all quite exhausted. Timmi is also quite discouraged, having seemed to progress so many times only to be thrown back again. She was very depressed when she first entered the hospital on Monday, and on Tuesday as well but Tuesday evening perked up a bit and since then has been able to watch TV and have normal conversations during the brief times that she is awake and not in too much pain.
There is no knowing when she will be released, or even whether she will be released before the next round of treatment, if there is one. So we've got at least another grueling week ahead of us. Thank God for Shabbat, though!
Shabbat Shalom to all.
Love,
Sara
July 29, 2005
In the fifth book of the Torah (Deuteronomy 30:19), God commands us to “choose life.” Many, perhaps most, people do not think of life as an option; rather, they live it unthinkingly, and without appreciating how very precious it is. But more than once in my life I have been faced with this choice, and never more so than when Timmi became ill and after she died. In both cases, the choice was not at all a simple one; but both times, I ultimately followed the Torah's command. I have not regretted either choice, and am extremely grateful that God in His mercy gave me the strength to choose correctly.
When Timmi became ill, Don and I were faced with extraordinary life-or-death decisions for which nothing in our previous lives had prepared us. Should we, for example, take Timmi abroad for second or third opinions, or should we simply trust her doctors in Jerusalem? Should we try “natural” alternatives or stick to chemotherapy, despite its horrendous side-effects and the fact (toward the end) that its effects were lasting for shorter and shorter periods, even as it was wearing her body down?
Questions such as these were relatively easy to answer at first. When Timmi was first diagnosed, we were told by a doctor of both Western and Chinese medicine that Timmi’s chances of cure were much higher with conventional medicine; the issue of alternatives immediately became a non-question for us. We very quickly saw that Professor Cividalli, Timmi’s oncologist, was both a true mentch* (I thought of him as a tsaddik**) and a world-class doctor, and found that any time we did consult specialists at prestigious institutions in the U.S., they invariably replied that they would choose exactly the treatment Timmi was receiving. Therefore, we didn't feel the need to disrupt her life and the family’s by taking her abroad for medical consultation (though I did take her to Paris for sheer pleasure; see “Paris,” November 2004).
As the cancer came back after each round of difficult treatment, in each case a shorter time after the treatment ended, living became harder for Timmi. On the one hand, each round gave her, and us, new hope. Perhaps this time the treament would work, and we would finally beat this thing - or at least keep her alive until the next medical breakthrough. But as time went on, it seemed increasingly likely that each treatment would merely cause her to suffer once again the chemo's intense side-effects and the next painful relapse. Was I commanded - and could I bear - to keep consenting to treatments if a longer life would only bring Timmi more agony?
Just about five years ago, after countless courses of chemotherapy and two bone marrow transplants, Don and I found ourselves facing the most difficult choice yet. Timmi’s doctors told us that there was only one option left to try. They could give her a highly experimental treatment - additional T-cells from Shari, but without any medication to moderate the effects of the GVH*** that the treatment might cause. The treatment carried the risk that uncontrolled GVH would kill Timmi, perhaps slowly and very painfully. But without treatment, the cancer would certainly kill her, and there would be no relief from the pain she was suffering at that time, other than through the fog and sleep of morphine.
The evening after the doctors gave us this choice, Don and I went for a long walk in Jerusalem’s Botanic Garden. We walked though the garden’s Australia section, and back through its North America section. We then sat down on a bench next to the lake near the garden’s entrance. Against the surreally peaceful sound of frogs calling from the lake, and the unbearably sweet fragrance of the garden's flowers, we finally faced squarely the overwhelmingly painful question we had to answer. What it came down to was whether to consent to a treatment that held a tiny prospect of success, but could also go wild in her body and cause her immense suffering - before eventually killing her. (We had not even been promised that the proposed treatment could reduce or eliminate Timmi's pain from the cancer.) The alternative was to spare her the risk, knowing that our decision would mean admitting defeat, and try our best to control her pain for the next few months until her certain death. A Hobson’s choice by any measure.
We struggled with our fear, our hope, and our despair, casting about for some guidance. How were we, as parents and as God-fearing Jews, to act at such an extreme and extraordinary time? I remembered how Professor Cividalli, who himself suffered from a chronic leukemia, had told me that he had hesitated before opting to undergo his first bone marrow transplant about a year after Timmi’s first transplant, after seeing patients die painfully from GVH. In the end, he had decided that any risk was worth the hope of life - and became the oldest patient ever to receive a bone marrow transplant in the hospital’s history. He had chosen life. He was not an observant man, and so it may be that he did not make his choice on the direct basis of the Torah's command. I believe, though, that he did so because as Jew he had been raised and taught to believe that every human being was created in God’s image and that, consequently, life itself - whatever its risks - is precious and of infinite value.
Don and I decided that the hope the new treatment offered - a possibility (however small) of a significant remission, together with relief from Timmi’s physical agony, was worth the risk. We both felt that although we might not have made the same decision had our own lives been at stake, we could not possiby act in a way that we knew for certain would end Timmi’s.
At the time we were agonizing over what to do, Timmi was barely conscious because of the morphine she was taking to ease her pain, and so we could not directly ask her how she felt about the risks of the T-cell treatment. But after we had made our decision to consent to the treatment, Timmi herself strengthened our resolve. When I entered her room just as she was about to receive the T-cells, and as she was sinking into a deep morphine sleep, she opened her eyes and looked at me.
“Ima,**** I’m afraid,” she said.
“What are you afraid of?” I asked, thinking she would say that she was afraid her pain would never end, as she had many times before.
“I’m afraid I’m going to die,” she answered, and slipped into sleep.
Timmi's reply told me all I needed to know. As much as she had suffered up to that time and as much pain as she was in at that moment, Timmi had unhesitatingly chosen life.
To be continued.
*Mentch - Literally, “a person” in Yiddish; a fine human being.
**Tsaddik - A righteous and saintly person.
***GVH - Grafts Versus Host Disease; see my previous posts for a fuller explanation.
****Ima - Hebrew for “Mom.”
Timmi returned home from the hospital today, after a week's hospitalization. In addition to the treatment that she got for her cancer, she also needed intravenous antibiotics because she developed a fever last Thursday morning; it turned out she had a bacterial infection in her blood as well as pneumonia. For the first few days, in addition to receiving a constant, high dose of morphine for the "breakthrough" pain she was experiencing, she was constantly attached to oxygen and had somewhat worryingly low blood pressure. After several days of antibiotics, however, she could be taken off the oxygen and her blood pressure went up somewhat.
For the first several days she was asleep most of the time from the morphine, waking very briefly once during the day and for a couple of hours at night; when she was awake she needed extra doses of morphine to deal with the pain. Gradually, the pain lessened when she was awake and she could even take a few steps, with support. As the chemotherapy started kicking in, her pain was reduced and so was her dose of morphine, enabling her to be pretty much pain-free when she was awake.
On Wednesday (yesterday) she received the T-cells from Shari that we hope will reverse the present oncological trend. The doctors gave her half of the cells they harvested; if she does not develop GVH within the next three weeks, she will get the other half, with possibly more doses after that.
Once she had received the cells, and because her pain, blood pressure and oxygen level were improved, she could be released. She is now connected to a small "home" morphine pump; we will reduce or increase the flow of morphine as needed. Because of the chemo, there is a pretty good chance that she will be able to mostly or entirely go off the morphine by next week. In addition, we will be giving her intravenous antibiotics at home for the next ten days. Of course, if she gets a fever or if the GVH kicks in seriously, she will return to the hospital.
I am quite exhausted after the past eight days. But it is a real gift to see Timmi out of pain, after the nightmare of last week's breakthrough pain (this is pain that cannot be effectively controlled even with high doses of narcotics). I hope we all never ever have to go through this again. Nor anyone else, for that matter, but of course given the world we live in this last wish is unrealistic.
Shabbat Shalom to all.
Love,
Sara
July 21, 2000
After three difficult days at home, during which Timmi was less and less able to drink or eat, she re-entered the hospital on Monday with extremely low blood counts (this is normal after chemotherapy) as well as some dehydration and serious pain in her stomach. The pain is also apparently a side effect of the chemotherapy. She has also developed a fever (to be expected in light of the low blood count), and is generally feeling quite bad. The stomach pains continue whenever she is awake, and she can't drink more than a small amount at a time.
The good things about the hospitalization are that she gets intravenous fluids, nutrition and morphine, the last of which she controls herself with a pump; she gets a steady background dose but can also add to it if she hurts. This is what she does when the stomach pain gets bad; usually the extra dose puts her to sleep. But if the choice is sleep or pain, sleep is obviously preferable. Unfortunately even the pain experts don't know how to keep her awake and comfortable at this point.
A worrying thing is that she still sometimes has pain in her knees, a sign that the chemotherapy shrunk the tumors but not completely. Therefore, it is possible that she will start a new round of chemo once she has recovered from this one. Also, she will get more T- cells if she does not develop GVH within the next couple of weeks.
We are all quite exhausted. Timmi is also quite discouraged, having seemed to progress so many times only to be thrown back again. She was very depressed when she first entered the hospital on Monday, and on Tuesday as well but Tuesday evening perked up a bit and since then has been able to watch TV and have normal conversations during the brief times that she is awake and not in too much pain.
There is no knowing when she will be released, or even whether she will be released before the next round of treatment, if there is one. So we've got at least another grueling week ahead of us. Thank God for Shabbat, though!
Shabbat Shalom to all.
Love,
Sara
July 29, 2005
In the fifth book of the Torah (Deuteronomy 30:19), God commands us to “choose life.” Many, perhaps most, people do not think of life as an option; rather, they live it unthinkingly, and without appreciating how very precious it is. But more than once in my life I have been faced with this choice, and never more so than when Timmi became ill and after she died. In both cases, the choice was not at all a simple one; but both times, I ultimately followed the Torah's command. I have not regretted either choice, and am extremely grateful that God in His mercy gave me the strength to choose correctly.
When Timmi became ill, Don and I were faced with extraordinary life-or-death decisions for which nothing in our previous lives had prepared us. Should we, for example, take Timmi abroad for second or third opinions, or should we simply trust her doctors in Jerusalem? Should we try “natural” alternatives or stick to chemotherapy, despite its horrendous side-effects and the fact (toward the end) that its effects were lasting for shorter and shorter periods, even as it was wearing her body down?
Questions such as these were relatively easy to answer at first. When Timmi was first diagnosed, we were told by a doctor of both Western and Chinese medicine that Timmi’s chances of cure were much higher with conventional medicine; the issue of alternatives immediately became a non-question for us. We very quickly saw that Professor Cividalli, Timmi’s oncologist, was both a true mentch* (I thought of him as a tsaddik**) and a world-class doctor, and found that any time we did consult specialists at prestigious institutions in the U.S., they invariably replied that they would choose exactly the treatment Timmi was receiving. Therefore, we didn't feel the need to disrupt her life and the family’s by taking her abroad for medical consultation (though I did take her to Paris for sheer pleasure; see “Paris,” November 2004).
As the cancer came back after each round of difficult treatment, in each case a shorter time after the treatment ended, living became harder for Timmi. On the one hand, each round gave her, and us, new hope. Perhaps this time the treament would work, and we would finally beat this thing - or at least keep her alive until the next medical breakthrough. But as time went on, it seemed increasingly likely that each treatment would merely cause her to suffer once again the chemo's intense side-effects and the next painful relapse. Was I commanded - and could I bear - to keep consenting to treatments if a longer life would only bring Timmi more agony?
Just about five years ago, after countless courses of chemotherapy and two bone marrow transplants, Don and I found ourselves facing the most difficult choice yet. Timmi’s doctors told us that there was only one option left to try. They could give her a highly experimental treatment - additional T-cells from Shari, but without any medication to moderate the effects of the GVH*** that the treatment might cause. The treatment carried the risk that uncontrolled GVH would kill Timmi, perhaps slowly and very painfully. But without treatment, the cancer would certainly kill her, and there would be no relief from the pain she was suffering at that time, other than through the fog and sleep of morphine.
The evening after the doctors gave us this choice, Don and I went for a long walk in Jerusalem’s Botanic Garden. We walked though the garden’s Australia section, and back through its North America section. We then sat down on a bench next to the lake near the garden’s entrance. Against the surreally peaceful sound of frogs calling from the lake, and the unbearably sweet fragrance of the garden's flowers, we finally faced squarely the overwhelmingly painful question we had to answer. What it came down to was whether to consent to a treatment that held a tiny prospect of success, but could also go wild in her body and cause her immense suffering - before eventually killing her. (We had not even been promised that the proposed treatment could reduce or eliminate Timmi's pain from the cancer.) The alternative was to spare her the risk, knowing that our decision would mean admitting defeat, and try our best to control her pain for the next few months until her certain death. A Hobson’s choice by any measure.
We struggled with our fear, our hope, and our despair, casting about for some guidance. How were we, as parents and as God-fearing Jews, to act at such an extreme and extraordinary time? I remembered how Professor Cividalli, who himself suffered from a chronic leukemia, had told me that he had hesitated before opting to undergo his first bone marrow transplant about a year after Timmi’s first transplant, after seeing patients die painfully from GVH. In the end, he had decided that any risk was worth the hope of life - and became the oldest patient ever to receive a bone marrow transplant in the hospital’s history. He had chosen life. He was not an observant man, and so it may be that he did not make his choice on the direct basis of the Torah's command. I believe, though, that he did so because as Jew he had been raised and taught to believe that every human being was created in God’s image and that, consequently, life itself - whatever its risks - is precious and of infinite value.
Don and I decided that the hope the new treatment offered - a possibility (however small) of a significant remission, together with relief from Timmi’s physical agony, was worth the risk. We both felt that although we might not have made the same decision had our own lives been at stake, we could not possiby act in a way that we knew for certain would end Timmi’s.
At the time we were agonizing over what to do, Timmi was barely conscious because of the morphine she was taking to ease her pain, and so we could not directly ask her how she felt about the risks of the T-cell treatment. But after we had made our decision to consent to the treatment, Timmi herself strengthened our resolve. When I entered her room just as she was about to receive the T-cells, and as she was sinking into a deep morphine sleep, she opened her eyes and looked at me.
“Ima,**** I’m afraid,” she said.
“What are you afraid of?” I asked, thinking she would say that she was afraid her pain would never end, as she had many times before.
“I’m afraid I’m going to die,” she answered, and slipped into sleep.
Timmi's reply told me all I needed to know. As much as she had suffered up to that time and as much pain as she was in at that moment, Timmi had unhesitatingly chosen life.
To be continued.
*Mentch - Literally, “a person” in Yiddish; a fine human being.
**Tsaddik - A righteous and saintly person.
***GVH - Grafts Versus Host Disease; see my previous posts for a fuller explanation.
****Ima - Hebrew for “Mom.”
Sunday, July 17, 2005
Pain and Poetry II
June 30, 2000
So much has happened in the last week that it's hard to know where to begin.
I came home from synagogue on Shabbat to find that Timmi had awakened that morning with very strong pains in all the old tumor places, as well as in some new places. She could not walk on her own and needed the wheelchair even to get around inside the house. We immediately added a pain patch, and gave her morphine orally, but nothing really helped all day Shabbat. After Shabbat, after consulting with Dr. Cherney, we increased the dose of morphine and that helped somewhat.
Sunday morning the pains had decreased a bit when she woke up, and after calling her oncologist I took her to the hospital, did blood tests and scheduled a bone marrow test and biopsy for the next day (Monday), and a scan for this coming Monday. The pain started getting worse again in the middle of the day so we added another patch, all together doubling the dosage of painkiller as compared to the amount she had been getting before the pains started on Shabbat. So much for the theory that the tumors were shrinking, or at least that they were shrinking in a consistent way.
After the bone marrow test and biopsy on Monday (when she woke up with a significant improvement in her pain level), the doctor looked at the slides from the marrow. He said he did not see "anything special" but was most interested in the results of the biopsy, which would be available only in a few days. I assume they will be ready by the time we go on Monday for the scan.
Because the slides looked relatively unspecial, because there would be no test results within the next days, and because the pain was again pretty much under control, Don and I were able, after bringing Timmi home from the hospital Monday afternoon, to get away for our vacation after all; as you can imagine, there was serious doubt from Shabbat until Monday noon as to whether we would really be able to go. So we lost several hours; not so terrible.
We did have a wonderful time at Mitzpe HaYamim. I had a different kind of massage each day! We also went for a day of hiking in the Golan (while it lasts, though we've been saying this since 1990 or so). The kids were fine while we were away, with Lisa and Shari very competently running things (even though Lisa, bless her heart, had jet lag as she arrived from the States Tuesday morning).
So now the next step is the scan this coming Monday, and the biopsy results. Then we'll see.
Shabbat Shalom to all.
Love,
Sara
July 6, 2000
Things are continuing not to go well. On Wednesday Timmi woke up with a pain in one of her knees that got stronger during the day, and in fact was so strong that she couldn't even get in and out of a wheelchair to get around, and Don had to carry her from place to place, and that only when necessary because any movement was excruciating. No amount of painkiller had a serious effect on the pain, which also kept her up at night. We spoke to her oncologist (Professor Cividalli) who told us that the PET scan that she had on Monday show both a spreading and a strengthening of the cancer, and so asked us to hospitalize her today. She will get a few days of chemotherapy, in order to shrink the tumors and ease the pain, and then will receive "T-cells" from Shari in an attempt to restart the GVH that she got and was suppressed when it got too strong. This time (assuming she gets GVH this time), even if it gets strong it won't be suppressed unless it gets actually dangerous.
There are some people we know and know of, including Prof. Cividalli himself, for whom this T-cell therapy worked wonderfully - after a rough spell with GVH, they now have a livable level of GVH and their cancers are in remission. Of course, there are also people for whom it did not work.
The pain is still not under control, but we hope it will be within the next day or so. In the meantime, it is quite painful for us, as well, to watch her going through this.
Shabbat Shalom to all.
Love,
Sara
July 16, 2005
There is no physical pain quite like the pain of cancer. And there is no emotional pain quite like that of a parent watching her child endure the pain of cancer. And both the child’s and the parent’s suffering is magnified by knowing what the pain signifies – that the tumors have returned or are proliferating.
Timmi wrote a poem in April 1999, a few months after she first relapsed, when her pain began to spread and intensify, signaling that the cancer was metastisizing throughout her bones. The words of that poem could equally describe her experience of the final, massive relapse that attacked her when I wrote these updates a little more than a year later.
It
is
spreading further and further
and
conquering every spot that had been free
Poisonous, black malicious
Chuckling of devastation, of evil, of defenselessness, of some
dark power
Extending long and emaciated and terrible and destructive arms
that grow
like some horrible nightmare from which we’ve not awakened and we'll not awaken
ever
And twist and twi-
st
and distort
and deform
and hold on
Hold fast by the nails Hold and do not let go Hold fast and wound
And if it does not bring death it will bring destruction of some other kind
Because there are no few kinds (to each his own destruction) Here it’s
bringing
So much has happened in the last week that it's hard to know where to begin.
I came home from synagogue on Shabbat to find that Timmi had awakened that morning with very strong pains in all the old tumor places, as well as in some new places. She could not walk on her own and needed the wheelchair even to get around inside the house. We immediately added a pain patch, and gave her morphine orally, but nothing really helped all day Shabbat. After Shabbat, after consulting with Dr. Cherney, we increased the dose of morphine and that helped somewhat.
Sunday morning the pains had decreased a bit when she woke up, and after calling her oncologist I took her to the hospital, did blood tests and scheduled a bone marrow test and biopsy for the next day (Monday), and a scan for this coming Monday. The pain started getting worse again in the middle of the day so we added another patch, all together doubling the dosage of painkiller as compared to the amount she had been getting before the pains started on Shabbat. So much for the theory that the tumors were shrinking, or at least that they were shrinking in a consistent way.
After the bone marrow test and biopsy on Monday (when she woke up with a significant improvement in her pain level), the doctor looked at the slides from the marrow. He said he did not see "anything special" but was most interested in the results of the biopsy, which would be available only in a few days. I assume they will be ready by the time we go on Monday for the scan.
Because the slides looked relatively unspecial, because there would be no test results within the next days, and because the pain was again pretty much under control, Don and I were able, after bringing Timmi home from the hospital Monday afternoon, to get away for our vacation after all; as you can imagine, there was serious doubt from Shabbat until Monday noon as to whether we would really be able to go. So we lost several hours; not so terrible.
We did have a wonderful time at Mitzpe HaYamim. I had a different kind of massage each day! We also went for a day of hiking in the Golan (while it lasts, though we've been saying this since 1990 or so). The kids were fine while we were away, with Lisa and Shari very competently running things (even though Lisa, bless her heart, had jet lag as she arrived from the States Tuesday morning).
So now the next step is the scan this coming Monday, and the biopsy results. Then we'll see.
Shabbat Shalom to all.
Love,
Sara
July 6, 2000
Things are continuing not to go well. On Wednesday Timmi woke up with a pain in one of her knees that got stronger during the day, and in fact was so strong that she couldn't even get in and out of a wheelchair to get around, and Don had to carry her from place to place, and that only when necessary because any movement was excruciating. No amount of painkiller had a serious effect on the pain, which also kept her up at night. We spoke to her oncologist (Professor Cividalli) who told us that the PET scan that she had on Monday show both a spreading and a strengthening of the cancer, and so asked us to hospitalize her today. She will get a few days of chemotherapy, in order to shrink the tumors and ease the pain, and then will receive "T-cells" from Shari in an attempt to restart the GVH that she got and was suppressed when it got too strong. This time (assuming she gets GVH this time), even if it gets strong it won't be suppressed unless it gets actually dangerous.
There are some people we know and know of, including Prof. Cividalli himself, for whom this T-cell therapy worked wonderfully - after a rough spell with GVH, they now have a livable level of GVH and their cancers are in remission. Of course, there are also people for whom it did not work.
The pain is still not under control, but we hope it will be within the next day or so. In the meantime, it is quite painful for us, as well, to watch her going through this.
Shabbat Shalom to all.
Love,
Sara
July 16, 2005
There is no physical pain quite like the pain of cancer. And there is no emotional pain quite like that of a parent watching her child endure the pain of cancer. And both the child’s and the parent’s suffering is magnified by knowing what the pain signifies – that the tumors have returned or are proliferating.
Timmi wrote a poem in April 1999, a few months after she first relapsed, when her pain began to spread and intensify, signaling that the cancer was metastisizing throughout her bones. The words of that poem could equally describe her experience of the final, massive relapse that attacked her when I wrote these updates a little more than a year later.
It
is
spreading further and further
and
conquering every spot that had been free
Poisonous, black malicious
Chuckling of devastation, of evil, of defenselessness, of some
dark power
Extending long and emaciated and terrible and destructive arms
that grow
like some horrible nightmare from which we’ve not awakened and we'll not awaken
ever
And twist and twi-
st
and distort
and deform
and hold on
Hold fast by the nails Hold and do not let go Hold fast and wound
And if it does not bring death it will bring destruction of some other kind
Because there are no few kinds (to each his own destruction) Here it’s
bringing
That summer five years ago was the last time Timmi was to suffer intense pain. The T-cell treatment she received succeeded in ridding her body of the tumors - but ultimately at the price of her life. Still, I do not regret having consented to the treatment (I’ll write more about that in my next post); at least during her last six months in this world she was out of the clutches of the monstrous pain that she described so eloquently in her poetry.
Subscribe to:
Posts (Atom)