March 16, 2000
Timmi is still hospitalized, as she is still unable to eat and keep down any significant amount of food, or drink enough to keep from dehydrating. Having lost about three kilos since entering the hospital (12 days ago), this evening she started getting TPN – intravenous nourishment.
The good news, though, is that it seems that the cause of her stomach inflammation is GVH; although the rash that had originally indicated the GVH has disappeared, it turns out that the GVH itself has not only not disappeared but is actually a bit too strong. (Just to remind you, the reason this is good news is that we want some GVH, which is an immunological response that we hope will fight her cancer.) She has therefore started receiving intravenous steroids as well as the anti-GVH drug cyclosporin. She will continue to receive the steroids until her clinical condition plus blood tests show that the GVH is under control; hopefully when this happens she will be able to eat and drink again.
Her mood has been quite good, as a general rule, since returning to the hospital. Unfortunately, the steroids will probably make her quite irritable and will almost certainly make it even more difficult for her than it already is to sleep. So for many reasons, we hope the medications will quickly be effective so that she will be able to stop taking the steroids as soon as possible.
Staying with Timmi all day most days in the hospital has been quite tiring for me (not to mention stressful, especially when we had no clue as to what was causing her symptoms), but her improved mood – together with my newfound serenity concerning my lack of ability to do much, other than be there, for her - has made this past week a time for feeling close despite our circumstances. I don't know how long it will last, but a period like this will give me something to hold on to the next time things get harder.
March 21, 2000
A quick update but I'm sure you'll all be glad to hear that Timmi was released yesterday from the hospital, and is now able to eat and (with some difficulty but sufficiently) drink. Also, the GVH seems to be having some effect and the cancer pains that Timmi was having have been reduced; we are trying now to see whether we can lower the dose of her painkiller patches.
*Happy Purim (see my last two posts).
March 29, 2005
Maimonides, the great 12th-century rabbi, physician, and philosopher, held that the most important factor for a healthy body, as well as for a healthy soul, is moderation in all things, which in turn leads to a balanced life. I believe that this precept remains true to this day. I’ve been at my best when my life has reflected a reasonable balance among all my obligations, pleasures and emotions. The trick, of course, is finding this balance – and keeping it. This was one of the most difficult challenges for our family when Timmi was ill, and an almost impossible one in the aftermath of her death. Today, many of the elements in my life – the complex, many-faceted life of a modern, educated mother – are fairly well balanced, but there are still many times when everything feels out of synch, and I lose my eqilibrium. What I hope is that the journey I will begin this summer toward an eventual career in social work will help me finally find, to the extent such a thing is possible, the balance that my life has been missing since Timmi died.
In many ways, Timmi’s struggle against her cancer was a balancing act. Physically, we wanted her various treatments to be effective, but not to kill or maim her with their side-effects. This dilemma reached its peak, of course, during and after her two bone marrow transplants. A transplant can certainly save a life, but it can also be deadly for several reasons. If the new bone marrow fails to “take,” the patient’s original marrow, which was destroyed before the transplant, will fail to regenerate and no new blood cells will be created. If the transplant "takes," but the new bone marrow does not completely match the old, the new blood may reject the patient’s body, in a process known as Graft Versus Host Disease (the GVH to which I kept referring in my updates). If the match is too incomplete, and the GVH is too strong, it may be fatal. But if the new bone marrow too completely matches the old, and no GVH results, the treatment will be ineffective against the cancer. And so Timmi's treatment was an ongoing attempt to attain just the right level of GVH, so that it would attack the cancer cells but not her other organs. This meant a constant adjustment of the dose of the various medications that she took to prevent the reaction from becoming too strong. Also, there were many times when she was taking a whole “chain” of medications – med A against the cancer, med B against the side effects of med A, med C against the side-effects of med B, and so on. Don once calculated that at one point there were six medications in this chain!
This constant struggle for balance was refected in the emotional sphere as well. We had to work all the time to keep Timmi as optimistic at possible - but while still impressing on her the gravity of her condition, so that she would cooperate with her treatment even when it was hard for her. (During her first illness, when she was twelve, for example, she had to take very unpleasant medications, and to have needles inserted into her veins unreasaonably often. Naturally enough, she sometimes objected strenuously.)
Socially, Timmi struggled with the opposition between her normal adolescent desire to fit in with her healthy peers, and the fact that her experiences had left their indelible mark, making her undeniably different from other girls her age. There were many times, she told me, when she was sitting with a group of girls talking about the usual teenage concerns, and would start wondering, “What on Earth are they talking about? Why do they care?” So she tried to balance her behavior, joining in the conversation just enough to feel that she had relationships with other girls her age, even if their communication didn’t touch on the issues that truly concerned her.
In parallel, each member of our family struggled with her/his own conflicting needs, desires and obligations. Don and I needed to care for Timmi and at the same time respond to the other children’s needs, continue to put food on the table, and somehow manage to tend to our own needs at least to the extent needed to avoid collapsing. And each of our children had to find an equilibrium in their relationships with Timmi, and with us. Their love and empathy for Timmi caused them to try to do what they could for her, and to understand why we expected more of them (in the older girls’ case) or had less time for them (in the case of the younger children). But their empathy and understanding were complicted by their natural feelings of resentment and anger. On the one hand, how can a child (or even a teenager) feel pure empathy for a person who is taking up so much time and attention, and such a large part of the family's other resources? But on the other, how can she be angry with a person - and a beloved sister, at that - who is suffering so much, and who may be taken at any time? There was no simple solution to these dilemmas.
As I’ve mentioned many times in this blog, after Timmi’s death my entire world went out of kilter, and for a very long time I felt as if my life was completely unbalanced – unhinged, as Robert Avrech so aptly expressed it in his blog Seraphic Secret. Not only did I lose Timmi herself, but I lost a whole world of experience, as the activities on which I’d been spending a great deal of my time suddenly became irrelevant; I literally didn’t know what to do with myself. The only way I was able to rebuild a sense of balance in my life was to focus on one thing at a time. If one of the children needed me, I would devote myself wholly to responding to that child, and tried to avoid becoming overwhelmed with thoughts of how devastating Timmi's illness and death had been for all of my children. If a friend suggested that we meet, I would concentrate on trying to tell her about myself - mostly about how my life had changed - and to hear about her life, and not on my feeling that an impenetrable wall had arisen between me and anyone who had not lost a child. If an opportunity to do some work (for example, a short translation or editing job) came up, I would focus on that one activity, without thinking about whether I would ever be able to return to a regular work schedule.
In this way, I’ve slowly and painfully regained a certain equilibrium, and am now able to handle several hours a day of work, more or less carry out my domestic responsibilities, spend time with my children and Don, and even find some time for myself – to read, or meet with friends. But there is still at least one time every day when it doesn’t feel right to be doing anything. I can’t concentrate on work or on reading, and don’t feel up to talking with anyone. At those times, I feel a certain panic, as if I’m lost in a wilderness somewhere without basic survival tools.
Although I’m very excited about my summer plans, I'm also quite anxious at the prospect of spending more than two months away from my family, in a city (New York) in which I haven’t lived since I was 17, surrounded by people with whom I don’t have a longstanding relationship. My lifestyle will be almost completely different than it is now - I'll be a full-time students as opposed to a working mother. I’m afraid all that sudden change will throw me off, so that I won’t be able to do even what I need to in order to finish this summer, let alone manage the two-plus years of the program.
But I hold on to the reason I’m going to New York. I'm going in order to learn to do what I can with my own experience going through Timmi's illness and death together with my family, to help other families get through that experience whole. I think there's a good chance that this sense of purpose will pull me together and give me the direction and the energy I’ll need to get the most I can out of my studies. And in the long run, I hope that my new career will fill my need to reconstruct, even if imperfectly, the world I lost when Timmi died.
With Timmi gone, my life will never be truly balanced again. But I hope and pray that the journey I’m starting this coming summer will ultimately bring me - and, perhaps, at least some of my family - to a new equilibrium, from which I’ll be able to help other families find their own balance.