A gathering to share our memories of Barbara Spiegel took place at 11AM on
Saturday, March 19th, at the Auditorium of the Courant Institute of Mathematical
Sciences at New York University. Mimi, Jean-Luc, Judy, Holly, Sara, and Philip shared their reminiscences of Barbara (you might have suspected that Barbara was a wild teenager, and now we know) and the music was utterly beautiful:
“Pleurez mes yeux” from LE CID By MASSENET [French]
“Io son l’umile ancella” from ADRIANA LEVOUVREUR By CILEA [Italian]
“Ay Vart” (Oh Rose) By SKENTYAROV [Armenian]
Dear Ed, We have joked and laughed together many times but this is a time to be sad together. Great operas show how sadness and grieving are a basic, elemental uttering of the human spirit---but they never capture, for all their art, how life really is when someone so dear passes away. Barbara was such a joy to know and be with during the many summers at Woods Hole (and elsewhere). Lin and I are with you and yours in spirit and with utmost sympathy during this sad time. Laughter will return from time to time, but now mixed with fond memories. Barbara would want it so. Jack Whitehad
Jack and I are sincerely saddened by Barbara’s passing and will always remember many happy hours in her company! She had such a wonderful, positive, joy-filled spirit, that it was infectious! One of the things I will always remember is the time she phoned and asked if I could recommend a voice teacher. Barbara wanted to audition for a very select choral group in NYC. What a special person to undertake a new endeavor such as this and with such motivation and enthusiasm, I thought! How many of us at her age (though Barbara was always young) attempt such a new challenge? Of course, she did take the lessons, was accepted into the choir, and even sang at Carnegie Hall. We will miss her so much and we extend our sincere sympathy to Ed, Mimi, and to all who loved her.
Lin Whitehead
Dear Ed, I am deeply saddened by the news of the passing of Barbara. She was a remarkable person and I have fond memories of all those evenings we spend together at your house in Woods Hole. I am so glad that my wife and my son actually got to know her on our last visit. Several years ago my mother passed away from cancer. I was present during her last days, so I have some real sense of what you and Barbara and everyone close to her had to go through in the last few months. Perhaps words are of no help here, but nevertheless, please accept our heartfelt condolences for the light that has gone out in your life.
Sandip Ghosal
The 2008 end-of-program picnic @ Casa Veronis (by Paula)
Charley and Paula
Barbara kept track of all of our lives: our birthdays (here she has recorded one of her interminable and grammatically perfectly well formed voice mails for me, in spite of being so techno-logically retarded) and our anniversaries. She also used to write us real, 19th century handwritten letters, on nice stationary and with cute high-culture postal stamps. We love you, even though we cannot return the call.
Predrag
Barbara was a wonderful friend and deeply musical. We'll miss
her so much. And, dear Ed, thank you too for everything.
Ruth and Michael McIntyre
We are so sorry for your loss Ed. She was an amazing woman, and a graceful, funny, beautiful friend.
Since we heard the news, Stacey and I have been talking and reminiscing about all the wonderful times we spent with Barbara: stumbling home at 3am in the morning, having finally escaped the Spiegels' merciless hospitality; Barbara's endless restaurant recommendations (always excellent); hearing Barbara sing the Messiah with her choir at Carnegie Hall; Barbara and her friends taking yoga classes from Stacey; visiting the two of you at the rehabilitation center, always greeted by Barbara's sweet smile and twinkling eyes and unstoppable sense of humor; and, above all, constantly admiring the love and affection that you both displayed so shamelessly.
All of these things are irreplaceable. We miss her terribly, but we are so grateful to have known her. Much love,
Shane and Stacey Keating
Dear Ed and Mimi,
John and I are so very sad to hear that Barbara has left us. When I last saw her, on February 4, I could see she was in a steep decline but the finality of her departure is still a shock.
She was a wonderful, generous person, always ready to listen and help. She made us feel welcome to New York after we moved here 15 years ago and Holly introduced us. She invited me to join her book group and introduced me to a wonderful member of the Oratorio Society who lived in my neighborhood. I shall miss her easy conversation as a lunch partner. Our deepest sympathy to you both
John and Mary Brown
As Ed wrote, a light has gone out, but we can always feel the warmth and clarity of the afterglow. Here is the only picture that I ever took of Barbara that she even slightly approved of: September 2005, Little Sippewisset Salt Marsh.
Holly Pedlosky
I'm so sorry, Ed. It's been years and years, I know, since we've seen you, but Barbara and I kept up by mail. She was without a doubt a wonderfully special woman.
Lydia Theys
My family feels blessed I brought Barbara into their lives and love her. Barbara and i started a friendship when we were seven years old. She continued to be a joy in my life. My family is supporting me in my grief and understand Barbara's death has left a big hole for me.
Angela Tiley
Mon cher Ed,
Je viens d'apprendre la nouvelle et ressens une très grande peine. Barbara était capable d'éclairer la vie de ceux qu'elle croisait. A la fois superbe, touchante et généreuse. Elle était tout en joie, en ingénuité et en finesse. Quelle plaisir c'était pour moi de venir diner chez vous à La Guardia place et d'être toujours magnifiquement reçu, ou bien de l'entendre chanter à Carnegie Hall puis d'aller au Burger Joint comme des écoliers en goguette. La grâce des moments simples.
Elle va nous manquer mais sa flamme nous éclairera toujours pour nous montrer le chemin.
Je pense fort à toi
Denis Gueyffier
Her light illuminated many lives, and made all of them richer.
There are no words to describe how much we will miss her. Love Sara Solla
My deepest condolences to Ed for the passing of this incredible and unique woman.
I remain, as always, his close friend, and wish him that he finds somehow enough strength to cope with this tragedy. Deepest condolences to Mimi and Philip for their terrible loss. Oded Regev
Cher Ed, Nous aimerions être à côté de toi, pour te dire combien nous aimions Barbara, son sourire, ses réparties malicieuses, son écoute permanente - toujours prête à rendre service. Nous perdons une amie très chère. Elle nous manquera terriblement. Nous te souhaitons de trouver la force pour surmonter cette épreuve. Nous t'embrassons affectueusement.
Jean-Paul et Suzy Zahn
Dear Ed,
What terrible news. Our hearts and thoughts go out to you, who have cared so patiently and so long for Barbara and loved her even longer -- since that first meeting, after noon, for breakfast.
She was a truly remarkable woman, who was much loved and admired by all who came across her. She definitely made the world a much better place and greatly influenced all who came in contact with her. I so remember our first meeting, in 1972. I had been at the Summer School for the first time, and, after eight weeks or so, felt that I knew all about how Walsh Cottage ran and who came to seminars and the like. One afternoon, a woman walked in and all hell broke loose. Everyone was so pleased to see her, and the man she came with. I guessed that this must be the fabled Spiegels; and I was right. And so was the commotion. She amazed me then with her warmth and friendliness; and continued always to do so, whether in our house, telling about making Hollandaise sauce by the bucketful, soothing, yet understanding my terrible, luckily now ex- , brother-in-law, staying in Cambridge, singing in the choir, accommodating both Julian and I, so many years ago, in New York; and on and on. She made our lives much more interesting and enjoyable. It is sad to think that your wonderful statement: tell to me in a way I can repeat it to Barbara will no longer be operable. But we will all remember her and her wonderful ways to the end of our days.
We join in sending you and Mimi our sincerest sympathies in this terrible time.
Much love.
Felicia and Herbert Huppert
Dear all,
I've stayed with Ed tonight. (I just happened to be visiting for one day, yesterday, of all days.) He says he has slept very poorly in the last months but appears to be sleeping now.
Let me recap the last couple of days. Monday morning I arrived in NYC and went directly to stay with friends on the upper-west side. Tuesday morning a bit after 9:30 I arrived at the hospice. Ed was there with an aide, Shelley. He had just spent the whole night there: they had woken him from his place at midnight to tell him that B's breathing had changed. Indeed, B was wearing an oxygen mask and her breathing was very labored. Her eyes were usually slightly opened, but there was no ocular response or indeed any sign that she was aware of her surroundings. She looked very shrunken from the loss of muscle mass.
Ed kept waiting for the doctor, whom several people had said would come by at various times, to ask about the oxygen mask and mottling of B's skin. At about 11:30 Mimi (who had arrived in the meantime) and I encouraged Ed to go home to get some sleep. We told him we would get him if something changed. He left and Steve Childress arrived. As the three of us were talking, suddenly Steve and Mimi noticed that her breathing had slowed dramatically, to a whisper. After conferring we decided to call back Ed.
I was difficult to tell exactly when she died. The breathing just became more and more subtle and eventually we just had to admit that she was dead. The saddest thing was that Ed didn't quite make it back in time -- I feel terrible for insisting he go home and get some rest. But on the other hand B was clearly completely unaware of her surroundings.
The rest of the day was a scramble for funeral arrangements (Steve took care of that). Mike Shelley and Jun Yin came over. We waited for the people to come and collect the body around 3:30. By that time only Ed and I were left. We took a taxi back to La Guardia Place because we had bags of B's clothes to carry. We then had a pastis and chatted for a while. Around six we went out to eat Japanese food nearby, with Mike. I'm happy to report that the discussion was the usual academic gossip. Ed of course is devastated but has enough energy and drive to talk science, as well as to complain about this blog. He stayed up part of the evening answering every condolence letter individually.
Ah, I hear him: he is up now!
All the best,
Jean-Luc
Just got an update.
B is in a state that make is it impossible to move her. She is staying where she is.
That is, they are not going home. Updates when possible.
Andreas
Tomorrow morning they are going home to Laguardia place. There is a person that will live with them and take care of B. My wife will help out two times a week. I am also under the impression that B is not in a very good shape. Will update when I know more.
Andreas
Our understanding from Ed and Mimi is that Barbara has been getting steadily weaker - her breathing has changed, her pulse is elevated, she is not opening her eyes or eating. There no signs from Barbara at all that she knows what is happening. Ed was hoping to move her home, but she is in a state that makes it impossible to move her. She is staying where she is. Ed is by her side and has not slept much if at all. Do not know what one can do to help them right now, but Jean-Luc 608 287 6419 is visiting today, and Andreas 917-348-1018 is keeping track, they will know better.
When I last reported on Barbara's condition, I was guardedly
optimistic because her walking and talking had noticeably
improved. It is true though, that I did not mention that she was
still plagued by an intense fatigue that kept her sleeping throughout
much of the day. That feature of her condition has worsened since
mid-January. (I write this on Feb. 3-4 between episodes of various sorts.) Even worse is that Barbara can no longer stand up on her own, let alone walk. And she is very uncommunicative. This may cause me to give up on or postpone the project of moving her home that has been our goal for some time. But, so far, I am still trying to keep moving in that direction with enormous help from Mike S. Also Alan W. has now begun to lend some assistance, especially in
peripheral legal matters.
Today we were told that Barbara could no longer have physical
therapy because the medicare coverage has run out. Moreover
there is no mechanism that would allow me to pay for this myself. And today, we could not rouse her for speech therapy. Her smiles,
which kept the spirits of everyone who saw her uplifted have
become infrequent and visitors are coming less often.
The difficulty of her not being able to stand led to her having a
fall while she was being changed into her nightgown a few nights
ago. The fault apparently was the inexperience of the caregiver
who should have known that Barbara should have been seated for this operation. The experience was made worse by the uncontrolled behavior of the caregiver after the fall. Since Barbara's decline had begun before the accident, who knows what its contribution was. I share some of the fault since I should have realized that the person in question was not sufficiently experienced in these matters of caregiving and I should have controlled her better in the aftermath. She was a replacement for someone else who seemed even less in touch with reality. I had prepared my case for an improvement in the caregiving on that day but the person in charge did not show up and
I had no way to present my case.
Another decision I have had to take is that, despite my misgivings about
the demeanor of our oncologist, I have concluded that Barbara needs
medical attention at that level. As he knows her case best, I have made
an appointment to have an MRI and an evaluation by this oncologist on
Feb. 8. But I think there may be other medical issues.
Barbara has been having breathing problems. Is this connected to
the tumor? I have been trying to catch one of the two visiting doctors to ask for an opinion. But they are rapidly moving targets.
There is a swelling around her throat. Is that goiter? Her hands
and feet have been twitching and I was worried that this might be
a form of mini-seizure. Certainly the amplitudes of these motions
went down this morning after Barbara had her anti-seizure medication. Barbara now sleeps fairly continuously, opening her
eyes occasionally but not speaking.
As I mentioned in a previous note, I was planning to contact Dr.
Grewall of Great Neck at the suggestion of Dr. Hsu, Louis T.'s
high school classmate whose advice has been invaluable. It
turns out that Dr. Hsu had asked Dr. Grewall to contact me. Our letters crossed but we finally made phone contact. Dr. Grewall is
in favor of trying Avastin, a drug that inhibits the formation of blood
vessels that feed tumors. In the present circumstances, I feel this
approach is worth considering. But 1.5 hours of travel each way
for treatment is too much to submit Barbara to. So Dr. Grewall recommended Dr. Pannullo at Cornell Medical Center and I have
written her. There has been no response, so I will try to reach her
by phone. As we enter the weekend, there is great uncertainty about
our situation.
The Barbara of January has left us for now and who knows if we
shall see her again. But, as the bard wrote, "Love is not love that
alters when it alteration finds."
Apologies for no updates for several weeks. Friends' visits have dropped off since Barbara suffers from intense fatigue and is less communicative. She
is not responding to rehabilitation therapy, and Ed has many difficult
decisions ahead, as to whether, where and how to move her.
I am posting this blog more because of Ed himself. He has been by Barbara's side up to 12 hours a day, and he is not doing too well himself. He too needs to see a doctor, but he has been reluctant to leave Barbara.
You can call him on his cell phone or her room - numbers are above under `contacts' - and offer to sit by Barbara's side after he has scheduled his doctor appointment and can give you the time he will be away. That might get him to actually go see a doctor.
A few decades ago, we visited Sol Rubinow (a theoretical physicsist, applied mathematician, biomathematician, fast chess champion,
bridge expert, raconteur extraordinaire) shortly before his demise in the wake of an operation for a malignant brain tumor. He was fully cognizant of his situation and had all his mental faculties. He looked straight at me and said, "The only thing that can save me now is a miracle." I did not then and I do not now understand what he meant or why he said that. I suppose it was his way of giving up hope while retaining some hope, in what was according to medical opinion
a hopeless situation.
I am not expecting a miracle (though I would not mind a good
break at some point). But I am haunted by the feeling that I ought
to try do something about Barbara's condition. Our oncologists have set us afloat in a sea of anguish with the advice that we simply make Barbara comfortable. That is, as I understand it, that we should settle down to a monotonic decay. Yet one hears that there are other courses to set. They may all reach the same destination but they may take us on different routes, some even worse than a steady decay, and none that may be called good. Would it be miraculous to happen to choose the least bad of the routes? As you can guess, I am wondering whether I should be getting some further treatment for Barbara, something that might help a bit without causing a lot of damage.
As I discussed this question with Steve C. one evening, we both were motivated by the striking improvement in Barbara's state without any treatment since the standard run of chemotherapy and
radiation in October. She has been feeding herself with a bit of guidance and encouragement, she can walk to the dining room (with some help) and she is talking, engagingly if not entirely fluently. She is in there trying to get out. Should I be thinking of rocking the boat by trying to help her with that?
Of course, I have sought advice, some of which has already been reported in these bulletins. In this bulletin I'll lay out the case
that has been made for and against Avastin, a drug that is often used as a follow up to the standard treatment. I would be glad to have
your opinions about all this.
First, let me recall the report of the examining committee at
MSKCC:
SPIEGEL, BARBARA
November 29, 2010
NEUROLOGY: BRAIN TUMOR CONFERENCE
This case was discussed at our multidisciplinary brain tumor conference in the presence of the attending physicians of the department of neurosurgery, radiation oncology, neuro-oncology and neuroradiology.
Barbara Spiegel is a 72 year old woman diagnosed in May of 2010 with a left frontal astrocytoma,
[Ed's note: In fact the diagnosis from MSKCC in May was of a stroke. The diagnosis of a tumor
was not made till late June.]
which was low grade on biopsy
[Ed's note: The biopsy was performed circa July 1 and indicated a grade III astrocytoma.]
but behaved as high grade radiographically. She was treated with RT and Temodar that was completed on October 5th 2010 during an inpatient stay because of poor mobility. She did not have gross resection because of the tumor location. She now has global aphasia and poor gait despite VP shunt placement in September 2010. She was readmitted to the hospital from the nursing home because of lethargy that has improved after increase in steroids. Spine MRI shows a plaque of enhancement in the cervical spine.
The Tumor Board recommendation was palliative care since the patient's overall condition and neurological debilitation precludes her from returning to live at home.
Anna Delios, M.D., Neuro-Oncology Fellow AD
Internal cc: Antonio Omuro, M.D.,
Jerome B. Posner, M.D.,
Philip Gutin, M.D.,
Yoshiya Yamada, M.D.
I asked Dr. Roy Lackey, my primary care physician, for his
advice in the matter. His reply:
Any intervention is worth considering. Avastin is a relatively benign therapy and is an interesting and potentially very successful treatment. I would go for it.
Dr. Jerome Posner, a respected authority, wrote this on Nov. 12:
The drug [Avastin] does seem to have salutary effects on gliomas, but the effect is short-lived and there is some evidence that the drug actually promotes spread of the tumor. Dr. Omuro's view is that some of the worsening of the MRI and worsening of her clinical symptoms may represent pseudo-progression
[Predrag's note: Pseudoprogression looks and acts like a progressing tumor, but it is actually due to necrosis (death of cells) and other inflammation arising from radiation and chemo. Pseudoprogression would remain stable in size and could eventually go away.]
rather than growth of the tumor. If so, it is possible that she may improve enough to return home and perhaps be a candidate for Avastin. However, although I am sorry to say, I am dubious that either spontaneous improvement or any major response to Avastin is likely.
Sigmund Hsu (a high school classmate of Louis Tao) has worked at
MSKCC and is a very astute and sensible person. I asked him what to think about this diversity of opinions. He had this to say:
That is somewhat the nature of the beast. Even at MDACC with 10 neuro-oncologists, there was a continuum from conservative to aggressive. In the end as long as the proper conversations have occurred regarding risk, honest benefit, and whether the treatment is more for the patient or the family, the decision will be the correct one. If avastin was not safe enough or efficacious enough, it would not have been moved into front line trails in combination with temozolomide and radiation therapy as in the RTOG study. If I were to try anything - avastin would be the first thing to goto. They are a littte far from you, but one our our fellows, named Jai Grewal www.nspc.com/physicians.html, has been out in practice in North Shore, LI for some time now. He is a very solid physician and would give a nice second opinion having trained away from the NorthEast.
The net effect of these letters was that I was in favor of trying Avastin. But Barbara's sister was strongly opposed and I felt that I should heed her feelings especially given that she worked for years supervising drug trials. Here is Mimi:
I have been hoping and praying, even without the FDA's decision, that because of the side effects of Avastin that you would not let her get this toxic drug.
The FDA's decision mentioned is the recent action to no longer permit Avastin to be given to treat breast cancer. That decision is likely to be appealed. On the other hand, here is Karl Lauby, a friend, in a letter to his friend about the experience of his wife with Avastin:
I guess all the fuss in the popular press about Avastin and some chemo combination, (a cocktail, right?) is about the variation that Lila received that led to this dramatic drop in her CA 125 I recorded in June 2008. According to my notes, that went on six months to January 2009. Then we tried weekly taxal. Then we tried the trial at MSKCC which did not work and things went downhill. So it appears to me Lila got a little more than the reported average of four months from this Avastin combination. (I assume cytoxan is form of close to standard chemo theapy.) I just wish we had not started to slide in the summer of 2009. I guess the nature of Stage IV ovarian is that the slide starts sometime. Just wish we could have kept on the level longer.
Here we are speaking of a case of ovarian cancer, so the relevance
of the experience may be in question. But my impression is that the statistics of this kind of thing that one reads about have to do with averages. Yet there are fluctuations such as the one Karl reports. But one does not even know if the fluctuations are due to the treatment. And the gains in any case are not great. For the moment I have not proceeded with Avastin because the risks that have been mentioned by some correspondents seem to have outweighed the chances of gain. Perhaps the next step is to contact Dr. Grewal as Sigmund Hsu has suggested.
Here is just a brief report from the front. Despite her
ups and downs and the problems with fatigue, Barbara
continues to reward caretakers and visitors with warm
smiles of greeting and pleasant remarks. Her speech
therapy sessions this week have been the best since
her seizure. However, she does still suffer from
perseverance in tests of cognition, that is, a tendency
to lock onto the previous question rather than to move
on to the next. This problem does not show up in her
conversation.
Yesterday at 1:00, I went off to the dentist to deal with a
tooth that had broken off and Mimi visited with Barbara. In
the late afternoon, Charles T. and Phil Y. joined her and I found
them all there when I got back with my tooth cemented back
on. Mimi then left and Charles and Phil joined us at the dinner
table with Mr. Hsu, a resident of the rehab center. It was
a lively occasion but Barbara ate very little of her dinner as
sometimes happens.
After dinner and a few moments spent back in Barbara's room,
Charles left and Phil and I went to the dining room to wait while Barbara was to be helped into her bed clothes by Carleen, the weekday caretaker. But we were soon followed by Barbara and Carleen on foot. Carleen had Barbara's arm but, otherwise, she
was under her own power. Barbara had decided that she wanted
to sit up with us for a while. I make this short story long because
this was a first. Two firsts in fact. Barbara had never before
wanted to stay up with a visitor and indeed was unable to because
the fatigue always won out. And the second first was that Barbara
had not before walked to the dining room without a wheel chair
available to back her up (though she now performs this feat in
physical therapy).
After Phil left, Barbara was restless when she got in bed and had
the impression that she had not had had her dinner. So I gave her some of the food from the nice snacks Phil had brought. Then
at last she slept, if fitfully. The next morning, she did not feel very well and reported being nauseous. Following a long nap, she began to look better, having slept for three hours. Two neighbors from our
building came by to see Barbara and we all went to lunch
At the physical therapy session at one-thirty she refused to walk.
She reportedly said to the therapist "Everything is over for me."
Ups and downs, ups and downs, day by day.
