Back in Glen Head

Dear family and friends,

We were in NYC for just about 24 hours, but it feels like we have been gone for several days. I love being in our apartment, looking out the big windows, especially at night, at the buildings surrounding Bryant Park to the north and west and the NYPL to the east. Watching the skaters is also a delight, day or night. Even the trees continue to be splendid.

The visit to Mt. Sinai went reasonably well. The reason for the meeting with the neurosurgeon was mainly to ask if a stitch that had suddenly crept out into the open from inside my scalp could be removed. It could, and was. It was a stiff little thing, about 1/2" long. Tricky. I had visions of my whole brain coming out along with the stitch. Not really, just a tiny little bit of apprehension. I also was a little concerned that the two depressions in my skull that were getting deeper. That's where the surgeon opened my head to get at the hematoma in my skull. His answer: yes, they were getting bigger. As the skull is healing, the . . . Well, I can't really explain it. Dr. Moyle assured me he could provide plates, I think, to cover the depressions, but I quickly said, "No, thanks," before even finding out how he would do it. Since he's a surgeon it probably would involve a knife. My hair, which is growing in, covers them anyway.

We were also there to hand off the tests done for and by the neurologist (Dr. O), two MRIs, the EMG test, and the incomplete record of the blood tests Dr. O had ordered. As an aside, I had blood drawn 3 times this week. The two doctors, Dr. Moyle and Dr. O, are in agreement that the compressed vertebra from the July fall is not causing the neuropathy in my feet and lower limbs. It's probably the blood condition. We left Dr. Moyle with all the records and perhaps he will look at them, perhaps not.

While we were waiting, a rather long time, for Dr. Moyle, Merwin ran down to the excellent cafeteria at Mt. Sinai and got us each a cup of soup and a roll. Delicious, and a good thing too because we had to be in Dr. Mascarenhas's clinic by 2.45, and it was just that when we started down. We would not have had time for lunch if we had waited (a thought too dreadful to contemplate: nothing at all wrong with my appetite). We got out of the clinic at about 4:45.

Amy and Dr. M were happy to see us. We got hugs from Amy and I got one at the end from Dr. M. It's such a good feeling to know that these practitioners and scientists care about us as individuals. The bad news is that there IS no Comfort trial for us. The trial is over and now the year-long process of proving to the FDA that the drug can be prescribed by physicians has begun. In other words, it'll be at least a year until I can start taking this promising drug. I had not been able to get into this trial a couple of years ago because my bloods were so out of control. Dr. Mascarenhas may have another trial for me soon. In the meantime, my local hematologist should continue to be my doctor, monitoring the chemo I take (doses go up and down according to blood values). So the news was not all good, but neither was it all bad.

You can see why it feels as if we have been away from Glen Head for a long time. And yet the best is yet to be told. Toby and Elliott went with Merwin to Szechuan Gourmet, our faavorite restaurant on the next block. I can't walk there these days, so they ate there and on their return brought me takeout, vegetarian steamed dumplings and scallion pancake. Yum. Elliott had not seen our apartment before and his enthusiasm and admiration were delightful, starting with the building itself (now a landmark building, facade only), and continuing with our apartment, with its magnificent nighttime view. Their permanent residence is now NYC, and they have a lovely apartment within walking distance of Lincoln Center and many other venues. So Elliott's admiration was especially gratifying. A good day, though exhausting.

The next morning Ralph, Judy and Mary Hill, came for breakfast, and we enjoyed the visit enormously. None of these three seem to change, ever. Salt of the earth. Ralph has played a major role in Shakespearean staging, with his return to original practices without pretending that what he does is what Shakespeare did, exactly. The main thing is bare stages, open lighting so that actors and audience members can see each other, speedy delivery, overlapping scenes with no scene changes necessary—and lively, invigorating performances. His several troupes, one in permanent residence in Staunton, VA, playing in the Blackfriars replica theater he caused to be built, and two traveling troupes, have brought the purity of early practice staging to thousands of people. If he were British, he would be knighted. His next project is to build a Globe replica in Staunton. What energy! What enthusiasm! It doesn't matter how long it has been since we three have seen each other: it's immediate closeness. Ralph is very good at making friends and holding them close to his heart.

After that, we braved the snow piles and puddles to go for a short walk in Bryant Park; picked up some sandwiches at the wonderful Pret a Mange (not sure how this is spelled), and even made a purchase at one of the Park's temporary boutiques. After lunch our dear friend Laury came for us and took us home (Dave had driven us in). Next time, though, I am going to try the LIRR—a step toward normality.

I have gone on long enough, enjoying my talk with all of you. Your news is very welcome.

Love,
Bernice

Love,
Bernice

What a day!

Is this snow real? Francesca and Ciara live in Italy. They may have been visiting England, where their father was doing Shakespeare research. In any case, snow in unusual places is an indication of climate change: that's what we should call it because certain types cite the unusual snows to support their theory that global warming is perfectly natural and has nothing to do with what we are spewing into the atmosphere.

Dear Friends and Family,

Did you read this morning's NYT front page? Big article on what can go terribly wrong with radiation therapy in the brain and spine. The fault seems to be the technician’s or radiologist’s in not setting up the machine correctly for these high dose, finely pinpointed blasts. These procedures are different from the multiple blasts that Merwin will receive, but it does give one pause. The machines delivering the radiation are all by the Varian Co.

Yesterday, Sonia could not get out of her street, which had had no plow come through at all, so Merwin was stuck making the oven-fried chicken cutlets. We were also trying to listen to the Nightly News and did not pay proper attention. Some smaller pieces of cutlet are like boards. Good old Merwin: he gamely ate one serving anyway and put most away in the freezer for other meals. Chewy but good, he said (I don't eat chicken, of course).

Sonia's dilemma reminded me of Feb. 1969, when Mayor Lyndsey did not get the streets of Queens and Brooklyn plowed for over a week after a huge snowstorm. Then the weather did not warm up, as it presumably will here in the next day or so. I remember this snow very well because at the time I had sat for my oral defense after submitting my thesis: I don't believe this is done any more; one's adviser signs off on the thing and that's the end. I had to sit at a table with about 5 professors, who had presumably read the dissertation and who queried me about it, and suggested changes. In those days, someone had typed the dissertation for me and had made 6 copies, all of which I had submitted. I had no worries about the dissertation defense, because I knew that no one was as expert in the field of John Barbour studies as I now was, having spent a year or two on the dissertation. That's another story I may get to. I also, frankly, did not give a damn, because my beloved friend, Merwin's sister, had died suddenly on Feb. 5, just a couple of weeks before, and nothing in life was as important as that fact, that this beautiful, cheerful, life-loving 34-year-old was no longer with us. I left the inquisition room with my briefcase full of the five copies that had been marked up, as well as my own clean copy. I was to revise my dissertation accordingly, but I just had to submit one copy, which probably would not be examined at all. I took the LIRR home and absent-mindedly left the briefcase, more precious than the contents, on the train—not realizing what I had done until I got on the Oyster Bay leg of the train ride. As soon as I got home, I called the LIRR and was directed to Lost & Found. Someone had given the briefcase and its contents to a conductor, who would take it to Lost & Found, where I could pick it up—in Queens. In the meantime, a huge snowstorm that had blanketed the whole area, had wreaked havoc in Queens. Gamely, Merwin and I drove through the messy streets, sometimes, if I remember correctly—and I may not—having to back out of a street and try another. I got the briefcase and faced the contents.

We had no trouble getting out of our little street. The story goes that someone in the neighborhood works for the Town of Oyster Bay and makes sure we have access from our little street to a main road. Pull. We spent hours at the Dr.O's office, getting an EMG, a test of my nerves. Turns out this tests only major nerves, not the tiniest ones. All the former are OK, so the trouble with my legs and feet must be caused by the tiny ones. What to do has to be worked out. In the meantime, I will try a medicine he suggested.

Tomorrow we go to Mt. Sinai, a big double-duty day, first with the neurosurgeon, then with Dr. M, whom we hope will put me on a trial drug that shows a lot of promise in ameliorating the worst symptoms. I have to qualify. But then we get to stay overnight in our apartment and have breakfast with our dear friends, Ralph and Judy, from Virginia, who are coming through. We expect to lay on a feast, courtesy of Zytenz, our next-door specialty store. Joy to look forward to, no matter what happens on Thursday!

Love to all,
Bernice

Snow and prostate news

These pictures are especially for bloggers in California, Texas, Arizona, Florida and Spain who sometimes doubt the news reports. Click to enlarge and return to the blog by clicking the the return black arrow.

Yes, we also had snow in Glen Head. It appeared to be about 20 inches of the stuff but the strong winds and consequent drifting makes that hard to judge. The pictures show the chronology associated with my own participation in this snowfall. The view is from my open garage door at the modest expanse of winter white. My snow blower was in peak condition and eager to get to work and its enthusiasm was contagious as I started up the engine. On his last trip down here from his New Hampshire home, son Arthur checked out and tuned up this winter wonder. Last year it was let out only two times for there was little snow but this early storm may portend a more active season. The next picture shows the snow blower resting with the job only half done and wondering why I am doing this fun work in two sessions. As best I could I explained that I would be back soon after I had my hot chocolate and a toasted bagel. And we did conclude in decently clearing the drive as seen in the final shot. Of course, snowy scenes bring to my mind my boyhood in Buffalo where, donned in my corduroy knickers that would freeze stiff as a board, I had an almost daily task of clearing the ever-falling snow with an old fashioned shovel. After such tasks all the neighborhood boys would play hockey on the icy streets that were never plowed in those days, and we did this under streetlights as the dark came in the late afternoons. As a teenager there were the added chores of stoking the furnace in the basement by feeding it shovels full of anthracite coal from the nearby coal bin. After the coals burned down a crank was turned to drop the ashes below the firebox. The often still-smoldering ashes were collected in metal bushels to be carried to curbside for morning collection. How much easier life is now with our automaticity and faithful work companions like my snow blower.

One of Bernice’s doctor appointments was cancelled yesterday since the office closed due to the snow. The JCC was also closed so there was no water aerobics for me but my snow exercises may have compensated somewhat. Today we went to Bernice’s neurologist who is trying to determine if her leg and feet pains have a nerve origin.

Regular bloggers will know that I have recently been diagnosed with prostate cancer. There have been many emails and phone calls asking what is being done and how I am feeling. I am feeling fine and am distressed mainly over the time and distracting nature of my coming treatment from doing what I can for my dear Bernice. I am going to discuss what I now know of the course of intended treatment so if that is not of interest please skip to the end.

A few treatment options were considered but one had the strong recommendation of my urologist. The cancer, although confined to the prostate, is at an advanced stage so the wait-and-see option would be very risky. Surgery for my age and the cancer condition was deemed problematic by the top prostate surgeon at Sloan Kettering. I am going forward with a combined hormone-radiation therapy. The main purpose of the hormone (it is called Eligard) is to severely reduce my testosterone level. Testosterone evidently speeds or somehow encourages prostate cancer growth. Before the development of such drugs castration was often the treatment choice. I am pleased to skip that prospect. On December 23 I received my first hormone injection, which is a one-month dose. I am to be alert to any side effects like night sweats or hot flashes or anything untoward. The young woman PA who administered the shot said that the hot flashes were woman’s revenge. I protested that I had done nothing. So far, there are no symptoms at all. After three months of hormone treatment the prostate will be “debulked” or shrunk in size which will be an advantage in the radiation phase. Hormone treatment will be for about three years.

Radiation oncology has advanced considerably in the past two decades. In the past cancerous tumors were killed by intense doses of radiation but the downside was that nearby tissue was often damaged. This result has been significantly eliminated by very impressive technology. Each radiation dose will be of two minutes duration and the beam of radiation will attack the cancerous prostate from a different direction during each session. There will be 48 sessions, Monday to Friday, with the time at the facility (I am told) no more than 15 to 20 minutes. The different directionality of each dose will create a cumulative exposure at the cancer and minimize the collateral damage to surrounding tissue.

In order to achieve precise targeting of the prostate two small gold sticks will be embedded in each side of my prostate. There will be a setup session in which a scan will be made and the results fed into a computer system. Subsequently, these gold markers will provide highly accurate fiducial marks to guide the radiation beam to exactly the correct place. I am greatly fascinated by the hardware and software of this system and know that, in addition to being cured, will be greatly entertained as I learn first hand about the process. For those who want to learn even more, this is the place at which I will be treated and Dr. Zinberg is my doctor:

http://www.advancedradiationcenters.com/drzimberg

At this time there is no plan to have little radioactive pellets embedded in the prostate. It is unlikely (I am told) that there will be hair loss, nausea, or pain.

May good forces be with everyone in the coming year.

Love to all,

Merwin

Abundant snow

The photos give some idea of our blizzard of 26 Dec through today. The photo of our deck, taken through the glass doors, shows how much there is. You cannot even see our 12' high stools. The sweep of the snow on the railing shows the wind's effect. The tree on the right is actually much closer to me; it fills my window, and it looks much more snow-laden than the photo version.


Dear friends and family,

I was lucky to get my walk in just as the first flakes had started yesterday. Merwin had gone out early to get bird seed for our feeders and found a mob at the supermarket. We have lots of food, leftover from the birthday party. I converted the salmon fillet into salmon salad and packed for the freezer most of the kedgeree, with two servings for Viv and Mel, which Merwin took over. All the candy went into the freezer too. That was my main work for the day, along with shelling the cooked beans to be added to Sandy's tomato soup, to which I will also add some tiny noodles. It was a very lazy day. My excuse was that I was recovering from the day before. My main activity was watching three movies. Don't ask me what they were. Nothing worth remembering. One was by the Coen brothers, the one about a bowling team to put it in its lowest denominator terms. Silly stuff, but it kept us wondering where it would go. I found I could lie on the couch in the study and see the computer screen where the movie was rolling.

Something happened with the power during the night, but by the time I was ready to get up it was back again. We are lucky here because a Lilco plant is nearby, and it seems to take care of our neighborhood. I an wondering if we will get to Dr. O today. The JCC is closed so no water aerobics for Merwin.

As you can tell, I have nothing much to say. The main reason for writing is to show the photos.

More interesting blogs to come, I promise.

Love,
Bernice



Merwin is out the door already, eager to try his snow blower, which he and Arthur had made ready for the winter.

I am wondering if I will get to my appointment

Birthday Joy

Dear friends and family,

Merwin had a grand birthday. He even got a chance once in a while to get a few words in. Harvey and Sandy came in the morning bearing all the fixings for lunch and dinner, including a huge salad and all sorts of appetizers. Sandy took over the kitchen, and Harvey picked up Rachael in Port Washington. We five ate lunch in my study, the brightest room in the house. Later in the afternoon Michelle, Dave and Lincoln arrived, and in the evening. in time for dinner, the last members of our party, from Brooklyn Sylvia, Marty, and Sylvia's brother Ron, who had driven there from Eire, PA, a rare occurrence. So there were eleven of us at dinner, a grand party. Sandy made tomato soup, Rachael made the kedgeree Merwin had requested and french fries, and Sandy of course had made the cake, which was gorgeous, chocolate frosting decorating the orange cake. And of course Sandy, who arranges flowers, had brought a beautiful bouquet. Many many people called to say "Happy Birthday. Too many to list.

The only down side was that Harvey decided that the threat of snow meant that they had to leave that night, and not stay over as planned. I had been looking forward to a foursome breakfast and a chance to chat. Sandy, who had worked so hard all day, bought the kitchen into pristine shape. The second load was in the dishwasher when I reappeared in the kitchen.

My day was not all that great physically. Lots of fatigue, lots of itching. I had to take to my bed quite often and eventually I had to ask everyone to leave me alone so I could try to sleep. But that was all background. The day belonged to Merwin, who enjoyed the attention. I loved the way Merwin enthusiastically explained his prostate treatments: he really likes the science of it. Of course he had other stories to tell also. I enjoyed his pleasure in being the center of attention and in the nice presents he got: 2 sweaters, 2 shirts, and a very good kitchen knife, lots of candy.

Now we are waiting for the storm, with lots of leftover food to keep us going. I am going to enjoy the day, looking forward to good things this coming week.

Love to all and Happy Holidays with family and friends,
Bernice

Feeling good

Dear friends,

A December 20 press release of Incyte drug trial. Very good results. If you would like to see what it's all about, check this site:

http://investor.incyte.com/phoenix.zhtml?c=69764&p=irol-newsArticle_print&ID=1509517&highlight=

MAYBE this will be available from our Dr. M when we go to Mt. Sinai on Dec. 30th. From the description, it seems perfect for my condition, Myelo Fibrosis. This is no longer a double-blind trial drug. I would get the real thing if I am accepted. The problem is that when I saw the wonderful, Shakespeare-loving Dr. Raza over a year ago, she would not put me on the trial drug because my blood values were off the chart. That's when we left her for the CEP-701 trial at Mr, Sinai, but it did not help the main symptoms.

Today I am sitting here with a smile on my face. I fear that it is not reality-based but results from the Lexapro my doctor wants me to try again to ease the itching. After 2+ weeks on this drug, the itching remains outrageously uncomfortable, but I am sleeping better and feeling more hopeful in general. That's because the drug is supposed to counteract depression. That's not my problem, but it also has side effects that could help my itching. OK, I'll take it for a while.

I also started on Tramadol HCL, suggested by the neurologist, Dr. O, to take as needed in anticipation (not after it starts) of foot and leg pain. Like any narcotic, it has its unpleasant side effects. If it works, the side effects would be worth it. We'll see.

Today is the first day this week that we don't have one or more visits to doctors. Yesterday Merwin had his first shot of the hormone he will be on for the next 2-3 years. Fortunately, once he gets started, he will only have to get it every 3 or 6 months. After three months on the hormone, he starts the radiation therapy. He's as upbeat as ever. He laughs at my jokes.

Dr. O called with the results of the Thoracic MRI yesterday: the T9 vertibra, is, as we know, crushed (the fall on July 23rd did that) and touching but not compressing the spinal cord. I had surgery at Mt. Sinai last August to stabilize the crushed vertebra and keep it away from the spine, so I will ask my neurosurgeon, Dr. M, whom I am also seeing on Dec. 30 at Mt. Sinai, if this condition is a change.

Yesterday, I had a second, a pelvic MRI. Why couldn't I have both on the same day and save me from having to go twice to the MRI facility? Because Medicare would not pay for both unless they were separate procedures. Crazy. A place to save money: pay for both and save on other costs, to say nothing of the hours waiting. The MRI tech praised me for my stoicism and kindness. What was special about my behavior? Nothing. Just my usual self. But evidently, some patients he sees are nasty. Why? What would be the point? At least I have figured out (and checked with the tech) that when the noise stops I can scratch an itch. I think everyone is disposed to be kind to me because I walk slowly with a cane. I don't use it at home, but it helps me in the outside world. And late in the day, I welcome the wheelchairs in the doctors' offices.

This blog has been very medical. Let me say then that Laury came by with a printout of Walter's comments on my Measure for Measure paper. He likes it and made some lovely comments, including some questions. I sent it back with my responses—and I think it is done! I also read and commented on Laury's review of Julie Taymor's Tempest film. I haven't seen the film (of course), but from Laury's review I think I have a good idea of it. That's the purpose of a review, of course.

With Sonia's help I also made a new dish, an egg noodle, baby broccoli, mushroom, sour cream and cottage cheese casserole. That was our lunch, but Merwin didn't eat his portion until about 4 o'clock, when we returned from the MRI. I had two portions, one before and one after the MRI trip. I eat a lot! It's a fight not to lose weight. Fortunately, I like eating. I finished off the leftovers for breakfast this morning.

Now for a day of very welcome rest in preparation for the very heavy day tomorrow, heavy but good: Merwin's birthday!

Happy holidays to all,
Bernice

Lots of doctors

Above (I hope) are photos of a woodpecker that feeds on the suet that Merwin puts out for these birds in a special feeder. The red you see on the right head is a stripe not visible on the sides of the head. We both can see three kinds of woodpeckers from our respective study windows, his study below and mine above. The suet attracts birds with short beaks, too, but they can't get at the suet, held tightly between two bark boards, and soon give up. Behind the bird you can see the tangle of branches that once supported the gorgeous flowers of fall. Somehow the branches have their own beauty.

Dear friends and family,

This has been a doctoring week. I am trying to get at the cause and a cure for the neuropathy that is forcing me to forgo such delicious events as seeing Ralph Cohen receive the Bernard Beckerman Award at the Columbia Shakespeare Seminar earlier this month and hearing his talk (though I will receive a copy, he promises). I will see, him, though, on New Year's Eve morning; he has kindly offered to visit us at W. 40th Street before he and Judy catch a train back to the South. I love making such plans; they buoy me up. I know, though, that circumstances can change plans. It happens over and over again.

Merwin and I met with a new-to-us neurologist. The office which I had visited before my fall on July 23rd could not give me another appointment until mid Jan. to do the further tests that had been planned. So we started over with a Dr. O whom our Dr. K had recommended. A whirlwind, and much more impressive than the neurologist we had seen in July. He must be about 6'7", a Russian from St. Petersberg, and full of himself, but in a charming way. He was more interested in telling us his stories about Shakespeare and Pasternak than in mine (I have one too). What he regrets most about being here, it seems, is that he can pick up a book by Mandlestam (a poet my father revered also) and "get it," that is, the full richness of the Russian language as molded by this great writer, but when he reads any work in English that is supposed to be great, he understands the words, but he doesn't get its deep layers, and he knows he is missing something.

He looked at the list of meds I take, and immediately glommed onto the Thalidomide I had taken for only about 5 weeks last summer. It did no good and was discontinued. I had to take Prednisone with it and didn't get off of that for months and months. Dr. O thought that the Thalidomide may have caused the Neuropathy. He wanted to know how soon after the thalidomide had the symptoms started. He has prescribed a pain drug for me to take as needed, perhaps before going out to dinner (which I have not done since my birthday dinner last July) because I can't sit with my legs dangling down without experiencing pain that gets worse and worse. Movies, the Columbia Shakespeare Seminar, concerts (unless they are in very local venues where I can bring a stool for my feet) are all impossible. Dr. O set me up immediately for two MRIs, the site of the T9 compression of a vertebrae that I crushed when I fell, and the pelvic region, where nerves could affect the feet and legs. The same day I saw him, I had the first MRI. Very uncomfortable because I was itching and could not scratch and because lying on my back on a hard surface is painful. A kind technician helped.

The more immediate and important doctoring has been for Merwin. Now that he has prostate cancer there are various options that have to be explored, and we have visited two doctors so far this week (a urologist and a radiation specialist) and had long consults with each. They carefully laid out their recommendations and provided full and helpful encouragement. This cancer can be cured or at the least restrained. Our son Harvey will speak to both of these doctors as well as to a famed doctor at Sloan Kettering.

Merwin is worried about being able to take care of me, and he was reassured that side effects of his treatment would not be too onerous or debilitating to drive and carry on much as usual, the JCC included. And I am upset because I know I cannot take care of him, except in the usual way I do, by making meals and suggesting what he might make himself. I am a good nurse and want to do whatever he needs.

By the way, "good from bad" point: we both enjoyed the view of the sky garlanded with streams of cloud on our drives to the doctors.

On the family front, Merwin's birthday is on Xmas day, and we will celebrate with a cake that Sandy will make. She and Harvey will prepare the whole dinner, unless I can persuade them to let me make one dish at least.

Yesterday before a doctor visit, Margaret, the whirlwind, came to clean the house because she had not been able to come on her usual day, and she and Sonia were here together. They liked each other immediately. And why not? They are both adorable, lively, charming women. I am lucky!

I can't stop without saying how thrilled I am that Pres. Obama signed the repeal of the "Don't Ask" fiasco, and that the Senate passed the Start Treaty and the 9/11 responders' bill. Wow! as some pundits are saying, a trifeca for the president. But he also mentioned today unfinished business, the Dream (immigration) bill, voted down in the Senate, and closing Guantanamo. He is tenacious.

Love to all, and with all the traveling to doctors, please understand if we miss a day or two.
Bernice