Good vibes at Mt. Sinai

Yair and Mechal are the proud parents of Hadassa, Gedaliah, and baby Yaakov Aaron. Yair is the middle son of my dear dear cousin-cum-daughter Sylvia. She still lives in Brooklyn, but two of her sons, Yair and Noam, have moved to Israel. Ari, her third son, lives near Detroit with his wife and children. It's wonderful to see these growing and thriving families.

Dear Family and Friends,

It is always good to hear from family, distant or nearby. Seeing these beautiful children brings a smile to my face. Just yesterday, on the train from NYC, I was pointing out to Merwin the old horse farm where I had stopped by to see the horses with Hadassa, who was visiting Glen Head with Sylvia. The horses poked their heads out of their stalls, very eager to see us and be petted. It was a magic moment, and a fleeting one because, soon after, this horse farm that had been there for years, maybe 75! had been sold and is becoming yet another landscape farm. Happy memories, tinged with sadness because I can only hope that we will see Sylvia's family when they come to Brooklyn.

Yesterday was an arduous Mt. Sinai day, but we are becoming comfortable there, greeted with smiles and hugs. My platelets are up again, which is a good thing, and the WBC is high as usual but no worse than it has been recently. I am dealing with the side effects of the meds. Itching is the main thing, but this recent bout started the day before I began CEP-701. I can learn to handle the nausea better. In all it was an up meeting, with five of us jammed into a little examining room, and these young medical people wanting to know about us, how we met, how long we have been married, etc. We brought out some of our old chestnuts, but without being wearisome. Dr. M. believes this med will extend my life. I am for that. He thinks I'll even be able to consider traveling again. That would be amazing.

Of course we traveled into NYC, leaving the house at 8:20 a.m. and returning at about 4 p.m. We got to the city in time for our 11:00 appointment: just. Then a couple of hours of the usual routine and then home. Lots of walking to get to and from subways and between subways and hospital. A good workout.

At home we both felt happy. I made Winnie-the-pooh for Merwin, and if you want to see a contented man, it is Merwin dipping his toast into the egg yoke. Then we decided to try "How to Succeed in Business Without Really Trying" on TV. After about 45 minutes, I could stand it no longer and I said, "I am bored by this movie." Merwin looked at me in wonder and said "Me, too." We were both hanging on, thinking the other was enjoying it. How's that for togetherness? And so to bed.

Love,
Bernice

Missed yesterday

This is a very old photo of Dottie and Abie, Rae-Rae's parents and David and Debbie's grandparents. Dottie had been a marine during WWII, and Abie was in the service also. They are buried in the military cemetery in Suffolk county, but how alive they look here--and remain in our memories!

Dear friends and family,

Sorry I missed yesterday. It was a itchy, sick day. No point in sharing the gory details. We had planned to go into the City directly to MoMA to see the Bresson [sp?] show closing that day. We had seen a little on Friday when we were there, and both of us wanted more more more. Then stay overnight and go to Mt. Sinai from 4E.

Instead I did a little work but spent a lot of time in bed. Fortunately, our wonderful Mitsubishi air conditioners do a great job. I spent over an hour on Skype with Satyaki, the grad student from Reno, who is helping me. He found a number of errors that apply to my section—all of which I corrected. He is a good, careful worker. I also finished going through my notes for Measure for Measure. I had written a pretty complete set but thought there were some lacunae that needed to be filled. Laury, in the meantime, is working on other sections of the intro, which I should be helping her with.

So today we are just doing a quick in and out, going directly to Mr. Sinai and then directly home again. I'll write again if there is anything new to report.

Love to all,
Bernice

Another friend

Here Here is a photo of Arthur and his new shed. His knowledge of building is amazing.

This is a photo of Debbie Akins, Rae-Rae's daughter: Isn't she gorgeous! And Rae-Rae’s eleven-year-old dog, also a beauty! I feel a special bond with Debbie, because she and I both settled down after some tumultuous years. Like her brother, very smart. It'll be great to have all three here in July, though Charlie, Rae-Rae's husband, won't be able to come with them. He has to work.

Dear Family and Friends,

Today is a terrible itching day, and that makes it a little hard to sit and write a blog , let along work. I take lots of anti-histamines and they make me sleepy. I am grateful this isn't a side effect of CEP-701. I know that because the itching increase started a week ago Thursday before I began the new medicine. Dr. Mascarenhas wants me to wean myself of the UVB treatment so I lowered the dose today, but I think I will keep it here until the itching gets under control with one or two or three Zyrtec pills.

Otherwise, things are going well. My pelvis has given me grief since the arduous NYC adventures of the past week, but a pain pill takes care of that pretty much, and I am not doing anything strenuous today. The plan is to continue working on Measure for Measure and hamletworks.org.. And of course chat with family and friends.

Love to all,
Bernice

Joys all around

Dear family and friends,

David Akins is the grandson of our oldest friends on Long Island, Dottie and Abie Spector, who, sadly are no longer here to feel joy from the achievements of their two grandchildren, so we have naches for their sakes and for the sake of dear Rae-Rae, their daughter. and for David himself: hooray David! Rae-Rae, Debbie (David's younger sister) and David will be with us next month. We are their Long Island connection now.

Yesterday worked out very well, in spite of the necessity to take more train trips than we wanted to make. We stopped off at 4E where Terry, the porter, put our little air conditioner in the window. The room wasn't too hot on this visit, but the air conditioner is bound to help. We had a little snack then went off to MoMA where we were meeting Rachael, Michelle and Rick. Lucky us! All of these beautiful people happened to be available. Rachael often has to work all day but had the day off.

Merwin and I had our last ride on the V train, which took us practically from door to door. Now we have to see if the M, the replacement line, will do the same. The plan was to see what we could in the museum and then have lunch at their restaurant there, The Modern. Merwin got a wheelchair for me, and I had a perfectly comfortable time. The marble floors would have been deadly for my pelvis if I had had to walk. My first visit to a museum since before March 16th, when that sidewalk broke my pelvis! I won't go into detail about what we saw, but it was all splendid.

Then the lunch itself was wonderful. We were celebrating Rachael and Michell's 25th birthday (a few days late) and Rick's new apartment. Everything was beautifully presented and delicious. Afterward, we went on to the LIRR via the E train, and then home. By that time I was too exhausted to do much but take a nap and read a little of the book that Barry had left at the door for me. Thanks, Barry! His ideas and comments began energizing me. Strange, but Hamlet always does that—thinking about the play and its multitude of possible interpretations wakes me up.

The itching remains a problem, but I think that things are going well. I feel so much better than I did a year ago that it is amazing. The stamina could be better. The itching could go away. But otherwise, life is good.

Hope that it is the same for you too!
Love,
Bernice

Frustrations and mis-steps

Dear Family and Friends,

We caused ourselves some unnecessary grief by assuming (remember the old mantra: "Assume and make an Ass out of you and me"? Well that was us. After planning a two-day trip to NYC, we decided that since our first stop practically, was Mt. Sinai, we didn't have to bring the CEP-701 pills—because after all they have the pills there. It's a bit of a fuss carrying them around because they have to be kept chilled, so chill packs and containers are needed—more to carry. Well, that was entirely the wrong idea: this is a study, and so the pills are given out for certain sets of days. Dr. M., after much going back and forth and running around by staff members to see if they could find enough pills (14) for that night and the next morning, we had to make a choice: skip the pills for that night and the next morning (with a bad effect on the study) or return to Glen Head. We chose the latter. We didn't want to mess up the trial by skipping 2 doses.

Dr. Mascarenhas gave me a thorough exam; he believes that the spleen is no longer palpable. He has thought that for a few weeks, even before CEP-701, but was more certain yesterday. That's a good thing. The round belly is probably related to prednisone. He is very very pleased with my bloods; it means that CEP-701 is working. The WBC, though still enormously high, is better, and the platelets are really good, over 350, almost normal. The only bad effect, possibly from CEP-701, is a rash on my face. I had started a new sun block on my face, so I will discontinue that and hope the rash goes away. Itching continues to be a problem, but Dr. M. wants me to taper down on the UVB light treatments, which I do for the itching problem. CEP-701 should prevent itching. Hasn't yet, though.

On the way to the bus going to Mr. Sinai I bought a pair of earrings from the street vendor next door on 40th St, and a pair of shoes on sale on Madison Avenue. Multitasking. I like shopping that takes minutes.

By the time we finished at Mr. Sinai, it was well after 5, and we wanted to get to Jay's book party. We took the subway to Chelsea and got there in time to say hello, grab some food, meet Hannah and a few others (Barbara, Meta, Mimi) and rush out, just making the 7:11 train to Glen Head. We did not arrive home until almost 9 p.m., at which point I counted pills, took 7 after eating an ice-cream pop (I've got to eat with pills!) and emailed Dr. M, as he had requested, apologizing for the tumult we had caused by leaving our pills in Glen Head, and telling him, as he had requested, how many pills I still have. He was very sweet in his response. We'll get more pills when we return next week. We know now that we have to allow lots of time there. Appointments, because of one thing and another, take hours.

I admire one good thing about their procedures there. No undressing and putting on skimpy paper gowns. You remain in your own clothes, obviously keeping them on the loose side, during EKG and all other monitoring. It would save time and money if everyone used hospital gowns minimally: time, money, embarrassment. It would especially be hard to wear a gown when the whole thing takes a few hours.

Everyone is very nice there, I should say. We are learning to recognize the various people we deal with.

Now we are off to the City again to finish our plans for these two days. I'll write tomorrow to report on the events. MoMA is in our plans, but I'll be in a wheel chair. After all the activity yesterday, my pelvis is sore. I will try to take it easy today.

Love to all,
Bernice

Same old, same old

Dear family and friends,

Did you know that through the Middle Ages and Renaissance and possibly beyond, “friends” was a term for “family”?

Not much to say today. We are leaving for Manhattan soon and our visit to Mt. Sinai this afternoon. Then later this afternoon there is the book party at Jay's home. We'll sleep at 4E tonight. Jay is celebrating the publication, posthumously, of his wife Beverly Jensen's book, Sisters from Hardscrabble Bay, which has already gotten some wonderful reviews, though it has not yet been officially published. It must be a mixed joy, to see Beverly's gifts celebrated—but no Beverly. Her sixteen-year-old daughter Hannah, will be there of course. I am not sure about Jay's son, Noah, who has just graduated from MIT. The writing group has been following the wonderful story of the initial prize and publication of one of her chapters, the enormous support of Stephen King, the person who also helped Ron McLarty (and of course many others we don't know about) through Jay's nurturing the book for months. Now it is here.

The session with the physical therapist went very well: he is pushing me more and more and says I am getting stronger. Still no SPIN in my immediate future, but I can go to the JCC and work on the hand bicycle and other machines—and perhaps take a chair-exercise class. Whoopee! I have missed my friends there. Elaine, Louise, maybe we can meet for coffee?

Lots to do to get ready, dear friends, so I will close now.

Love,
Bernice

French friends in the U.S. and U.S. friends in France

The insouciant Raymond on his birthday; Michèle, the tree hugger, and what a tree!; and the Lavin family in a park in Paris, left to right: Katie, Brendan, Sarah, Sophie, and Gracie.

Dear Friends and family,

Seeing all these dear people on my screen makes me smile!

The big news of yesterday was seeing the gorgeous lilies that have opened on our little pond, ranging from red to pink. There is a volunteer tomato plant near the house, but a dead apple tree that needs to be cut down, the quick and the dead in the garden.

The meds are working well, not in terms of a positive effect (yet) but in terms of not having a negative effect. Nausea just about gone—if there at all. Many many pills to take, and I am making a effort to keep careful records. (Did you ever notice that "ills" is inside of "pills"?).

One of the best parts of the day was our lunch with Bobbie and Norman at their home. Norman had done most of the preparation, but Bobbie does the presentation, which was gorgeous of course. Bobbie is going to send me recipes, all promising to be easy and healthful, though they seemed decadently wicked on the platters and in the mouth. Menu: mock chopped liver (best I have tasted), green salad and coleslaw, tuna mousse, and quiche, the fluffiest ever. Norman had made Mandelbrot (something like biscotti) for dessert, and there was also ice-cream cake left over from father's day on Sunday. I ate too much, some of almost everything, and in one moment I went from lively conversationalist to a person desperate for sleep. Merwin took me home where I slept for about 90 minutes and stayed in bed until 6 p.m.!

Other good things—My morning session at the physical therapist was excellent: Jack says I am very much stronger than I was just a few weeks ago. Also, I worked on my notes for Measure for Measure; it is very satisfying to see them become shapely and helpful. I am always aware of the students' needs when I write notes and enjoy the process of seeing my notes through their eyes. Also had a Skype conversation with Satyaki, who has not done much work for hamletworks.org yet because of his first ever college teaching gig, which has overwhelmed him. He feels so bad, but his course will be over soon, and then for 6 weeks or so he will work with me on hamletworks.org. every day all day (he says). I mailed the first packet of work to Becky, another helper. I am eager to see if a long-distance arrangement for us will work. I always enjoy going to the Post Office in Glen Head, where I get nice greetings, especially from Evelyn, who wants me to feel good. And the pièce-de-resistance came late at night, when I could hardly see straight I was so tired. Harvey called to see if I had any corrections on something he had written, and without the paper in front of me I was able to explain a few possible improvements. Not bad! The memory definitely is gong, here and there, but then comes through sometimes in surprising ways.

I hope to surprise myself today too! And you too, I hope, will surprise yourself in some good way.

Love to all,
Bernice