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.