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.
Monday, September 26, 2005
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.
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