Libby's letter to Barbara

Dear Barbara,

Jean-Pierre told me yesterday that you have been very ill, and I have been thinking of you and holding you in my heart ever since. I hope this note finds you feeling better.

I have been thinking back to the wonderful times we had together in New York in the late 70s. I had just met my future husband at the opera. Soon he introduced me to his brilliant professor and his elegant wife. You have the gift of being sincerely interested in the people around you and soon I was lavished with the special Barbara brand of attention, which included sumptuous dinners in your home, where you showed me before I had even been to France what sophistication and good food was all about. [You are such a practical person, too, though. Just last week my daughter Sarah, said, “Mom! You can’t put wooden spoons in the dishwasher!” and I replied, “Barbara told me in 1980 that she puts everything in the dishwasher, and if Barbara does it, then I can too!”]

One time J-P and I tried to show you that we could cook gourmet meals too. J-P had shopped for ingredients at the crack of dawn and spent the entire day cooking. The four of us had a memorable meal together and when you left at 2:00 a.m., an exhausted but happy J-P shut the door, lay down on the floor, and fell asleep in the hall! That only happens with very best friends.

Do you remember the time the four of us took the Freddie Laker flight to London? They didn’t serve food, so you supplied the most extravagant picnic I have ever had in my life, from foie gras to tarte au citron. The people in the nearby rows hated us!

Back in New York, I remember the two of us—you and me—struggling through the joys and pitfalls of the publishing business. We were both wondering what our niche could be, and I remember your simple insight: “Writers write.” This was tremendously helpful to me in my decision to make my career instead on the editorial side. I have thought of these words many times since.

It was a tremendous gift for me in those days to have such an instant connection with you, Barbara. You were married and established in your lifestyle, and I was so grateful that you took us into your lives. It was simply astonishing that, because of your open and deeply caring manner, we could and did talk about absolutely everything. Your great knowledge of people is happily paired with a seemingly infinite concern for their well-being, and for that we love you very much.

With a warm, warm hug for all you have given to me over the years,

Libby

November 23: Bad to Worse

[When you last heard from me, the issue of what to do next was opened and it is still unresolved. But that has been shelved because of recent developments that I describe here.]

Barbara has been growing increasingly lethargic in the past few weeks and having more difficulties with her speaking. There seemed to be a transition for the worse on November 10. I managed to find out that her daily dose of steroids had been discontinued on that day and was able get it reinstated because (I suspect) that Dr. Delosso was humoring me. (He seemed to base his reaction on the behavior of his mother when his father had also had an aggressive astrocytoma.)

Since the onset of Barbara's increased weakness and fatigue there were many ups and downs, yet Barbara carried on with her usual bravery, cheering people up with warm smiles of recognition as they came by. But, by the weekend of November 21, she had become ever more somnolent and was unable to interact with her visitors over that weekend. By Tuesday morning (23rd), she was unable even to stand up for her physical therapy and was put into bed shortly before 10:00am. I was unable to wake her in the next two and a half hours and sought medical advice. No one was available at Dr. Omuro's number and the local medical staff on Hudson St. was in conference, but I finally reached Dr. David at the Rusk Institute on 17th St. Dr. David suggested that it was an emergency and that she ought to be taken to a hospital.

When Dr. Delosso in the rehab center finally emerged from the meeting, he agreed that the situation was serious and arranged to have Barbara taken to MSKCC. Once there, we went straight to the Urgent Care Unit where we spent some time having a chest X-ray, a CT scan and a catheter inserted to measure the urine production. We were then moved up to our old haunt, the neurology ward. There the neurologist on the night shift, Dr. Saad, came to tell me that he suspected meningitis. I googled meningitis and I did not find the diagnosis convincing. Dr. S. wanted to do a spinal tap (a.k.a. lumbar puncture). I asked why he did not get the fluid from the shunt and he said that only a neurosurgeon can do this and there is none on duty in the evening.

Since Barbara's symptoms were not a good match for the list I had found on Google so I didn't know whether to let them do the puncture. However, Dr. S. considered it urgent to start the treatment at once if Barbara had meningitis. So I finally agreed, after consultation with Mimi and Engelbert, though I still had misgivings. Barbara did not enjoy the proceedings and, as I learned early the next morning, she did not have meningitis. Medical opinions that I received the next day confirmed my suspicions that the lumbar puncture was ill-advised.

[ An Aside.
When you get off the elevator on our floor of MSKCC, you are greeted by a poster warning people not to visit if they have cold symptoms --- fever, sneezing, sniffles, cough. But when the Dr. S. was getting ready for the spinal tap (on our floor), he put on a mask, behind which he was coughing. I asked if he had a cold. He said that he did not, it was only a sore throat.]

Before Barbara's lumbar was punctured, we had to wait till after the MRI was made. As it turned out, a competent examination of that would have suggested that the tap was unnecessary. And so Barbara suffered for my uncertainty.

But that MRI brought even worse news: the tumor has grown. I learned this first from a Dr. Chan who was doing rounds together with the usual crowd of acolytes. Dr. Chan, who was on his last day in MKSCC, said that the latest MRI had indicated growth of the tumor and thought that some portion of the tumor might be surgically removable. However, Dr. Gutin came by later in the day and expressed doubts about this suggestion. He will talk to Omuro about this. In the meantime, Barbara's dosages of steroid and anti-seizure medication have been increased. If she can get stronger she may be eligible for trials of some kind. Otherwise, some sort of hospice care is the forlorn option.

For now, we are still in MSKCC and are likely to be here till the November 29th, at any rate.

Ed

Communicating With People Who Have Aphasia

[If you should be planning to visit Barbara, please have a look at these guidelines. Best wishes, to all. Ed]

Some "Do's & Donts":

Aphasia is a communication impairment usually acquired as a result of a stroke or other brain injury. It affects both the ability to express oneself through speech, gesture, and writing, and to understand the speech, gesture, and writing of others. Aphasia thus changes the way in which we communicate with those people most important to us: family, friends, and co-workers.

The impact of aphasia on relationships may be profound, or only slight. No two people with aphasia are alike with respect to severity, former speech and language skills, or personality. But in all cases it is essential for the person to communicate as successfully as possible from the very beginning of the recovery process. Here are some suggestions to help communicate with a person with aphasia:

Make sure you have the person's attention before communicating. During conversation, minimize or eliminate background noise (such as television, radio, other people) as much as possible.

Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don't need to speak louder than normal but do emphasize key words. Don't talk down to the person with aphasia.

Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.

Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.

Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.

Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.

Encourage them to be as independent as possible. Avoid being overprotective.

Whenever possible continue normal activities (such as dinner with family, company, going out).

Do not shield people with aphasia from family or friends or ignore them in a group conversation. Rather, try to involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with day to day details.

These guidelines are intended to enhance communication with persons who have aphasia. However, they cannot guarantee that communication will be immediate or on a par with former skills.

Aphasia

This link from Ed on aphasia: www.nidcd.nih.gov/health/voice/aphasia.html is interesting; Barbara's tumor is in Broca and motor cortex area, her aphasia matches what is here described as "Broca’s aphasia," and suggestions for family involvement seem very helpful.
Predrag

A biography of cancer

For a big perspective, The Emperor of All Maladies might be a book worth reading.

Predrag

Jack Whitehead - Barbara visit

I was able to visit Barbara and Ed on Thursday, November 11 while I was visiting Courant/NYU. After a noontime seminar followed by lunch at Courant, Steve Childress, who earlier had offered to accompany be for a visit, took me the few blocks to her room in the care center. She was with someone at the moment, so we went next door to join Ed, who was sitting with laptop in hand. He was very glad to see us both. After a few minutes of nice chat, we were allowed into Barbara's room where she clearly registered delight to see us both. Naturally, she didn't expect to see me but registered surprise and happiness clearly. In fact, she repeated "came all this way" two or three times after which it was clear that additional words came slowly to her. Soon, Joe Keller, who is staying in the city for a few months, joined us. Barbara slowly dropped to sleep in spite of the brilliance of the conversation and the wit of the jokes. We guys enjoyed a wonderful visit for a hour or so. She woke up alert and rested and after a few more words, we gave our fondest goodbyes. Barbara clearly looked very well even though she obviously has spent a lot of time in bed. Ed is a loving and attentive mate, and I can understand why he wants to stay with her as much as possible. I think short visits in the afternoon are greatly appreciated. Thank you Steve for helping me with this visit.

Jack Whitehead

The drug Avastin

A Direct Hit of Drugs to Treat Brain Cancer
NYTimes Science section, November 09, 2010

The brain surgeon to call is John Boockvar, phone 212-746-6042 e-mail jab2029@med.cornell.edu

posted by Joe Pedlosky

A few pictures

A few nice pictures of Barbara and Ed by Jean-Paul Zahn.

Another MRI

On the afternoon of Nov. 2 after my meeting with the staff on Hudson St. [see previous bulletin], we got organized to go uptown for an MRI at 66th St. followed by an interview with Dr. Omuro. We got Barbara into warm clothes (it was a nippy day) and were just about to leave for uptown at 1:15 when a visitor appeared. She said that she was from the Rusk Rehab Center on 34th St. and that she was there to follow up on Barbara's condition. She is supposed to see Barbara every week, though this was news to us and was typical of the surprises we have had over the duration of B's illness. (Last week, her son was sick so she had not turned up.) The timing was wrong as we had to leave and not much information was exchanged. So off we went with Barbara in a wheel chair and Carla (one of the daughters mentioned in the last bulletin) to catch a cab on the street to the newest MSKCC campus on 66th St. and 2nd Ave. After a bit of fi ddling to get the wheel chair into the trunk of the cab, we were on our way.

Though we were quite early for our appointment, the MRI was not done on schedule and so we were late for our appointment with Dr. Omuro on 53rd St. We needed a cab to get from 66th St. and 2nd Ave to 53rd St. and 3rd Ave., which was not easy to fi nd around there at 5:15. But we wheeled a few blocks and got one. (We had phoned ahead to report that we would be late.) The nice assistant (receptionist?) remembered Barbara, greeted her warmly, and spoke of her plans to run in the NY marathon. Then a high level nurse asked us for details about Barbara's condition. And we were left alone for a while to await the appearance of Dr. O.

When Dr. O. came in, he did his best to display some humanity as he asked the usual questions. He got Barbara to stand and to walk a few steps and announced that she was walking better than when he had last seen her about a month previously, at the conclusion of her treatment. He seemed surprised about this, it occurred to me. Perhaps he was relying too much on the MRI, which he must have seen already. Then he tried her on speech. He asked what the date was and she smiled and said she did not know. I know lots of people walking around at large who would not know either. But, after a few such questions, whose answers she did not know, he pronounced her speech proficiency unimproved. He made no allowance for the facts that she had had two harrowing taxi rides, a lengthy stretch in radiology and that his manner was not soothing (to either of us). He felt that her speech problem would not improve and that this was a bad symptom. (For more on this issue please look at www.nidcd.nih.gov/health/voice/aphasia.html) He then called me into another room and said that the MRI showed no improvement in the tumor and that he felt that the treatment had not helped. He therefore suggested not giving more treatment and that we should consider hospice care. He had clearly looked at the MRI before seeing us and, I surmised, had made up his mind about the prognosis already. He did not off er to show me the latest MRI and I was too numb with grief to ask.

[ Intermezzo: On hearing my report of Tuesday's happenings, Doris Baker kindly o ffered to ask a doctor she knows at MSKCC to look into the matter and report his conclusions to me. I received a gracious letter from his assistant and a note from him summarizing his confi rmation of the report by Dr. O. concerning Barbara's diff use astrocytoma. (It became `dif use' during the two months it took to diagnose a tumor at NYU and MSKCC.) He also mentioned that she had been called completely aphasic.

I answered, somewhat intemperately, as follows:

My thanks to Dr. Posner for his trouble.
While I do not dispute the diagnosis stated I would like to point out that the conclusion that the patient is aphasic was made on the basis a couple of prefunctorily off ered questions to which the reply given was "I don't know." But the examination was conducted after the patient had been through a longish taxi ride through traffi c, a long session in a waiting room followed by an MRI scan lasting nearly an hour, a struggle for a taxi at 5:15 on 3rd Avenue and another passage in a waiting room. I know people who might have failed such a test who are distinguished members of learned professions.
On the next day, staff members in the rehab center were commenting on a witty remark the patient had made.
Moreover, I was not off ered a look at the scan but I imagine that it had something to do with the conclusion that must have been reached before the examination since it made no appearance during our presence.
I hope that not all your diagnoses are reached in such a cavalier manner.
Sincerely,

Then, under orders from Predrag and others, I added this foolishness:

Edward A. Spiegel Lewis Morris Rutherfurd Professor of Astronomy, Emeritus, Columbia University

Ever gracious, the good doctor responded that, having not seen the patient, he could not comment on the degree of aphasia but that symptoms of of tumors are intermittent (not his word). But, he added, there is extensive tumor shown in the MRI. ]

At that point in the examination, I turned to the question of trying cannabinoids which are considered palliative and which some investigators suspect may cause tumors to shrink. He brushed the whole subject aside saying, in eff ect, that at MSKCC everything is known and that there is nothing to this notion of the good eff ects of cannabinoids. I had with me a copy of a short one-paragraph letter from Alice W. that reported that her doctor had said that tetrohydrocannabinol (a.k.a. Malinol) is apparently harmless and might be beneffi cial in such cases. He refused to read that short paragraph, which came from the Stanford Medical School. So back downtown we went, tired but unhappy.

On the next day, I spoke to the nurse practitioner at the rehab center who had been on top of the situation from our arrival at VillageCare Rehab Center. I asked about malinol and she said that it is routinely used to stimulate appetite. She off ered to use it for Barbara instead of the appetite stimulator that she was already using. So all my worrying about getting someone to prescribe malinol for us was unnecessary.

Barbara was still quite tired on the following day but, on the day after that, she was more alert. She did well in physical therapy and her p.t. therapist, her speech therapist and Diana Childress each commented that her speech was improved. This is good news. But what now?

Wednesday news

Barbara looked good and was quite alert today and talking a little better.

Mimi

Mid-October to beginning of November

Yesterday, Mimi and I met with the team at the NYU rehab center on 17th St. The situation, as I already knew from my reading, is grim and we can expect things to get only worse. The choice offered was to continue treatment or just stop. In the best case, with treatment, we have one year, though exceptions arise. I elected to try another round of treatment to see if Barbara could feel better for a while. We also had to choose between bringing her home and getting her into a sub-acute rehab center. That is a tough call since she needs help with all her activities and would be at risk of injury at home, especially as things get worse, even with hired help. I am leaning toward a rehab center but it is a painful choice. Predrag has come and is helping me get ready at home if it goes that way. He and Steve Childress have installed the motion detector in the small room. It beeps in the bedroom but the frequency is high and it is not loud enough to wake me up if I am asleep. This triviality is really a decisive factor since Barbara does not wait for help. And she cannot walk unaided.

Oct. 24: Sub-acute on Hudson St.

Barbara was moved from Rusk on 17th St. on (or about) Oct. 24. to the sub-acute rehab center (VillageCare) on Hudson and 12th Sts.

The center assigned (what they call) one-on-one persons to watch her around the clock. They normally do not provide such care and it was kept up for only two days and two nights. But Barbara was still not aware enough to be cautious. She tried to get out of bed whenever she felt like it. However, she could not stand or walk without support and such actions put her in danger of falling. I had to act quickly and hired a woman and her two daughters to maintain a 24-hour watch on Barbara. They charge $15/hr for this service.

This team was found by Mimi who found it through a friend of Barbara. They have done such work for several patients, until the patients died. They prefer to work in the patient's home where their care includes light cooking and cleaning, travel to medical appointments, and administration of medicines. The mother has various licenses for these tasks. Such one-on-one treatment for a year would run into some serious expense, but I feel it would be worth it if it gives some comfort to Barbara. I cannot tell whether she likes what is going on but I do not detect any enthusiasm. I am not entirely happy with the three ladies --- they seem a bit insensitive. Since Barbara cannot speak, this is an awkward situation. I have to decide what to do when B is discharged from this rehab center, which is considered short term. Once we go home, it becomes awkward to change the arrangements.

Nov. 2: Evaluative meeting

On Nov. 2, the staff had its evaluative meeting. They had to decide whether the goals for Barbara had been met after her nine days in the center. They felt that this may have happened since she has been able to walk a bit (with some support) as a result of the physical therapy they provide. By raising their expectations of the goals, they were able to agree to another two or three weeks here in VillageCare. So I now must seek a long term solution for looking after Barbara.

In the afternoon, following my meeting with the staff in the morning, we had to go uptown to for the first MRI since the five weeks of radiation and chemotherapy. Then the oncologist will no doubt pronounce on the situation. That will be reported in the next installment.

Hospice next

[posted by Predrag, notes from phone conversations with Ed and Mimi, sorry if garbled]

Dr. Omuro decided that further treatment is unwarranted, and that Barbara should be moved to hospice care. Ed is angry, but also understands and accepts that hospice is the next step.

Barbara smiles, can walk a few steps and even crack a joke. The critical step now is to make sure that she gets into the new VillageCare facility. Mimi says that the private rooms are very nice and spacious.

For comic relief: There is now considerable literature on the Kolmogorov-Spiegel-Sivashinsky equation. Ed protested that he does not know the Kolmogorov-Spiegel equation, but was told that Kolmogorov does not have anything to do with it either. But KS equation could be mistaken for the Kuramoto-Sivashinsky? That's how it got renamed the KSS [Kolmogorov-Spiegel-Sivashinsky] equation. Ed has no clue what it is.

Visit to NY

Hi everybody, I just spent three days in New York, mostly with Barbara and Ed. It is very sad to see Barbara having so much difficulty express herself, but it was also great to see her. Lots of visitors dropped by: Joe and Alice, Mimi, Judy, Susie, Charles.... Ed and I had a couple of meals together when Barbara slept. Ed is in touch with an adviser from a health care provider about what to do next, regarding care if B has to go home, etc. I talked to her and she seems very helpful. I also got to travel back to Madison with a metal African statue to give to Donna Page, a woman who mounts Ed's art for him. Previously it was all wrapped and ready to be shipped by post, according to Ed, but Predrag unwrapped it thinking it was an incoming parcel, I suppose. These are the dangers of meddling with the Krusty Old One's home office! Best, Jean-Luc