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.
3 comments:
So sorry for your loss.
Dear Sara,
Your Timmi, olav ha shalom, must have been quite a remarkable person!!!!! Her poetry reminds me very much of John Gunther's son Johnny in Death Be Not Proud, a story chronicling his son's struggle against a vicious brain tumor. Of additional interest is the postscript of Johnny's Jewish mother. I'm was hoping to soon see
another of your posts; woulds't only that it could be about something other that your family's tragedy; in any case, I can relate as this year, Cheshvan 23, November 22, will be the 5th anniversary of Ben's passing.
May you and your family know of no more sadness!!
Peace!
Alan D. Busch
Dear Sara,
When I last received your email, I was aboard a ferry in the Puget Sound, Washington State. Thrilling experience made even better by your note from the Holy Land!!!
Sincerely,
Alan D. Busch
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