A luminous light is extinguished

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My darling Bernice died at 6:30 AM on November 29, 2011.

I described our Thanksgiving in my last blog posting. Here is a picture of all who were gathered.

First row: Michelle, Laura, Rachael, our three granddaughters. Barbara (Sandy's sister) and Matt (Barbara's guy.) Middle row: Debbie with son Arthur behind,

Debbie's mother (Alzheimer victim) B&M (after almost 61 years) Murray (Sandy's dad.) Top row:  Sons Arthur, Lincoln, Lawrence (Sandy's brother), H&S. Son Dave arrived too late to get in the picture.

In the days that followed, Bernice grew weaker at an alarming rate. She was in pain and on Monday we arranged for Hospice care. Bernice made clear to the Hospice enrolling nurse that she was ready to go and the sooner the better. Sunday night had proved very difficult for me in lifting and guiding Bernice to the bathroom so I had son Dave stay with us on Monday night. He proved an invaluable help.

At around 5:00 AM when Bernice called us we were unable help her to any bathroom function. Her left arm was now blue and swollen and she said she was in terrific pain. We called 911 and she was quickly transported to the ER at Glen Cove hospital. I followed the ambulance and when I got inside I saw her heart still beating on the monitor but in less than a minute there were no more beats and she was gone. It was 6:30 AM.

Her enlarged spleen was a symptom of her cancer condition. She called it her 10-month bump. It appears that her spleen ruptured and this was fatal.

I will miss my darling wife of more than 60 years more than I am capable of expressing. This may well be the last posting of Bernice’s blog.

Here is the notice our synagogue posted on line:

With sadness we report the death of Bernice Kliman, a woman who was 
much beloved, respected and admired. Bernice showed us how best to 
live life and how best to live with dying. With her wide circle of 
family, friends, colleagues and synagogue members, her death leaves a 
wide chasm in the world. 

Most sincere sympathies to Merwin and to her 
children and grandchildren.



The family will observe shiva at the Kliman home, 70 Glen Cove Dr, Glen
Head,
on Wednesday evening, Nov 30 from 7:00 to 9:30pm and 
on Thursday evening, Dec 1 from 6:30 to 9:30pm.
 A minyan will be held Wednesday at 8:00pm and Thursday at 7:00pm. 

At present, a memorial service is scheduled at the synagogue on Sunday, 
January 15 beginning at 11:00 a.m.



Zikrona liv'raka / May Bernice's memory be for a blessing.


Love to all,

Merwin

Post Thanksgiving

Dear All,

On Wednesday we returned to Mt Sinai and Bernice went through the now-familiar through evaluation and blood draw. Her WBC was higher, now up to 259. The story with the blasts is a little clearer to me now. At these elevated levels of WBC (white blood cells) Dr M says he relies on the manual blast count as being the most accurate. Measured this way her readings have been 2, 12, 9, 5 and this is encouraging. Her spleen was just slightly smaller. Dr M sometimes speculates out loud about possible relationships and we appreciate this. With the fibrosis in her bone marrow, Bernice’s body has transferred a portion of stem cells responsible for creating blood cells to her spleen — hence, its enlargement. With some spleen shrinkage it might be that some blasts (immature blood cells) are being forced out. Dr M, in looking back at past blood reports, noted that the last time her WBC were so high was just after the trauma of her terrible fall on her head in July 2010. There is much detective work in research medicine.

This Mt Sinai facility is a very warm and welcoming place where many of the staff knows Bernice and greets her with smiles and some hugs. Alice, her research nurse is a runner who appreciates Bernice’s 1984 NYC marathon run. Alice is in a “Turkey Trot” 5-mile run starting at 6:00 AM Thanksgiving morning.

Bernice’s broken wrist is not only painful but it is debilitating. A social worker from Mt Sinai is to contact us about arranging for physical therapy. We will continue weekly visits until mid-December when a decision about remaining in the trial will be made.

On Thursday morning, Thanksgiving day, Boeta came at 8:00 and helped Bernice in the shower and to dress for our trip. Aware of the dire travel warnings of packed highways we set off at 9:30 on our way to Harvey&Sandy’s in Connecticut. This is an 85-mile trip we have made countless times under many weather and traffic conditions. We had an audio book to listen to and there was no rain. As I moved along at high speed encountering very few cars I kept anticipating a glare of red brake lights but they never materialized. We arrived just after 10:40 and had made the trip in record time. Son Dave made the same trip but left at noon and he was on the road for four hours. All four of our sons were there, three granddaughters, Sandy’s dad, sister, and friend — a real family gathering. Granddaughters Rachael and Michelle living in NYC are seen more often so it was a special treat seeing Laura who is very busy and lives in Boston. Laura is much occupied finishing her PhD dissertation in organic chemistry that she will defend in mid-December. She will spend the first week in January in the warm Caribbean with friends before she moves to Chicago for her new job.

Bernice rested in mid-visit and then we all gathered for a grand banquet. We left after the meal but by this time, despite the happy visit, Bernice was exhausted. On the way she had rested in the reclined passenger seat with her feet elevated on the dashboard. We brought along a pillow and blanket and Harvey and I got her into the back seat where she closed her eyes and rested during our return trip. We again, made it home in record time. Dave left at our departure and very helpfully pulled up at our house just as I was trying to get Bernice’s prone body up out of her makeshift couch. Thank goodness for a pair of stronger, younger arms.

Boeta came today and was her usual helpful presence. Bernice and I just relaxed.

Love, Merwin

Better news? Maybe

Dear friends,

Being a patient or a family member involved in today’s medical world can be sometimes be uncertain and confusing. We returned to Mt Sinai today where Bernice’s blood was again drawn and submitted to both the automatic machines for analysis and studied by doctors under the microscope. On our last visit on Thursday, Nov 17 we tried to absorb some disturbing news. It appeared that there were 27% blasts.  Her white blood cell count had risen to 209 (normal is 4.5 to 11) and the 27% is compared to this total. As I explained in the previous blog this could be an indication of a transformation to leukemia. This news came at the end of the day and Dr M indicated that the data would be scrutinized carefully and the blood would also be analyzed by flow cytometry, where the blood passes through tubes and each cell type is identified and counted. Today we learned there were some discrepancies in the different measurement modes. The 27% was the measure from an automatic machine. Three hematologists using a microscope repeated this measurement and their result was about 12%. Better, and half of what we heard at first, but still not so good. But the flow cytometry registered a 2% value! This is not only confusing for us but, for now, is also a bit of a mystery to the medical staff.

I relate all this, dear readers, not to educate anyone in the art of blood analysis, but to help describe how difficult it sometimes is to judge the status of situation from what may be superb medical information laden with its own ambiguities.

Bernice might be close to being eliminated from the trial but, since her next infusion is not scheduled until Dec 15, it is valuable and necessary to continue to collect all medical data. Dr M noted that Bernice with her fall, breaking her wrist, has not been the ideal trial candidate. The medical investigator in a trial makes every effort to observe every side effect and such changes make the task difficult.

One welcome change was recorded today but there is no knowing if this could be due to the drug. Both Bernice and Boeta thought that Bernice’s enlarged spleen had shrunk. I was asked and cautiously agreed. Measurements proved it to be so: on Nov 10 it was 24x24 cm and today it was 22x20 cm.

Dr M wants Bernice to make an effort to exercise more for her arm in a cast, has prevented her from taking walks with her wheelie. He will arrange for a physical therapist to come to our home.

Boeta accompanied us today and was invaluable. There were no problems with the parking lot. We are due to return to Mt Sinai on Wednesday.

On Thursday our plan is to leave in the morning on the two-hour drive to Sandy and Harvey’s where we will see the family including our darling three granddaughters and enjoy a Thanksgiving feast. Bernice will be able to rest there between acts and we will return that night.

Happy Thanksgiving and love to everyone,

Merwin

Breaking News

Hello dear friends,

Our week started with a bang but, unfortunately, it is ending on a more somber note. Our attention at the end of last week and during most of this week was centered on determining the cause of the recent chest pains Bernice has been experiencing. Last Thursday, November 10, Bernice had her initial infusion of an experimental drug as part of the drug trial for which she had been accepted at Mt Sinai. Dr M the principal investigator and Bernice’s hematologist/oncologist at Mt Sinai had emphasized the importance of finding the cause of these relatively new pains. We saw Dr G her cardiologist on Friday and he was certain that there was no cardiac problem but thought it prudent to have an echocardiogram. Ironically, on Monday morning before the advent of any breaking news, there was an evaluation visit from a nurse from our long term care insurance company (who are paying for Bernice’s health aides.) At about 1:00 that afternoon Bernice went to our pantry, got a small can peaches, turned, lost her footing and fell on our tile kitchen floor. I heard the crash and with heart in my mouth saw my dear sprawled on the floor. Her right arm was scraped and oozing blood but she was fully coherent and, much to my relief told me it was not her head. She had chipped a corner out of one of her upper-front teeth. Now came some drama. I was unable to lift my sweetheart and I called our local fire department. In less than five minutes two strong policemen lifted her. We went to the ER and found that Bernice had broken her right wrist. She now has a hard fiberglass cast. We certainly did not need this she said. Since the heart was not involved in the chest pains we continued our doctor visits to see Dr B the GI doctor about a possible endoscopy. He thought that with her weakened condition and her low oxygen saturation levels, the anesthesia would make the procedure risky. He did not say so but I feel that he suspects her problem is esophageal and he gave her some pills to try for two weeks.

On Thursday we returned to Mt Sinai for the required weekly monitoring between the monthly infusions of the trial drug. We took Boeta, Bernice’s super health aide, along. On prior visits I could leave Bernice off at the hospital entrance and she could make her way navigating her trusty wheelie while I parked 5 blocks away in the special lot provided by the cancer institute. With her cast her wheelie was unusable. We arrived for our 11:00 appointment and were soon seated in one of the examining rooms. Bernice had the usual tests and answered questions from the research nurses and doctors under Dr M. Her blood was drawn but we did not see Dr M for some time, as it was a very busy day at the clinic. When we finally saw him he performed his examination, asked more questions, but ordered more blood drawn for additional tests.

He returned after a longer wait with the bad news. Her blood “had 27% blasts.” Blasts are immature blood cells that ordinarily mature in the bone marrow where all blood cells such as red, white and platelets form. More tests were to be performed so the full story is not yet clear. Last week there were only two blasts and that was unusual. Now there is an unwelcome crowd. Their appearance can signal a transformation to leukemia. We are scheduled to go to Mt Sinai at 10:30 on Monday and we will learn more. It is highly likely that her participation in the trial will be terminated. Once again Bernice made clear to me that she wants no extraordinary measures extended on her behalf.

We were ready to leave Mt Sinai at about 3:30 and figured we would beat the rush traffic streaming out of the city. But, somebody or something that arranges such things had evidently decided that something comedic was now in order. I arrived at the parking lot and handed in my ticket. This lot has cars stacked on five levels and I could see my mine on the second level. The attendant pushed the proper buttons and swore. The car lift was not working. Repair mechanics were called. More patrons were gathering in the lot. I laughed and soon returned to Bernice and Boeta. We grabbed some food in the hospital cafeteria but did not get underway for our trip home until 7:30.

Boeta came today and, among other helpful chores, helped Bernice with a shower (with a bag covering the cast.) She also prepared lunch. We will see her on Monday when she will accompany us to Mt Sinai once again.

Bernice wanted me to get this news out on the blog to avoid long responses to how things are progressing. We do appreciate email and phone calls but I have now communicated much in one fell swoop.

Love to all from both of us,

Merwin 

Dear Friends and Family,

Things have been rather rough for me—I suppose because of the infusion or because of the spleen encroaching on my esophagus. The chest pain is increasing enough to force me to take a pain pill every four hours. And wonder of wonders‚ I have no appetite. Mentally I would like to eat, but the first bite brings on pain and nausea. Merwin has sent a report to Dr. M. as requested, and Dr. M. wrote directly to Dr. G. to suggest an endoscopy if the heart is OK.  If the infusion reduces my spleen, it will improve the situation. Altogether,  my body has to adjust to the drug. I could not go on Saturday to Tilles Center (10 minutes from here) for a concert by the Vienna Philharmonic on Saturday. But I am confident that things will improve. I am not unhappy, just weak, and the drug makes me very sleepy.

I note that the upgrade of this program allows me to attach videos, so I will try my favorite—very old and
faded. but lovely anyway. Note the camera work; it makes me smile to think of it.

Big news: A date has been set for Laura's defense of her dissertation in December, and she has invited friends and family to attend. —and she has he job she wants, putting her PhD in organic chemistry to use in an industry working on ethanol developed from something other than corn. Hooray for Laura! She has already rented a lovely apartment in Chicago, and will not be far from her aunt (Sandy's sister) in the city. I wish I could go to her defense (in Boston)!

Remember, Jesús, your defense, and the honor I had of being on the panel? What a thrill that was to participate in the discussion, and the bountiful celebrations!

Laura's sisters Michelle and Rachael, are preparing essays for graduate school, and I am one editor. This is work that I can do, or will be able to do when I get better.

Today I was able to go with Merwin to Christ Church for a marvelous concert by the Long Island Baroque Ensemble. I have written about this group before. This was an especially bright and  lively concert. I lasted the whole time, but with my eyes closed. The drive to Oyster Bay is lovely. I have been relishing the changes in the trees, and they were especially beautiful today. Leaving at about 5:00 p.m. we were treated to a lively display of sunset colors.

Lovely day: hope you had one too.

Love,
Bernice

Yippee!

Above is a flyer for the movie  made by Mark Blackman (incidentally a second cousin of Cate Fisher). Mark has single-mindedly pursued his dreams. Do go, if you can. I will have to wait for the DVD!


Dear Friends and Family,

We're on! We went to Mt. Sinai today as directed two days ago and after a lot of questions, mainly the same ones as usual, about such things as night sweats: two changes  of nightshirts (Dr. M: That's not a little!) and some doubt on Dr. M's part about proceeding, I finally was accepted. He was flabbergasted and annoyed that I had not called him about having chest pains and going to our cardiologist/general practitioner, Dr. G, on Monday. I had complained of chest pains when walking this past Sunday in the NYC with my wheelie, finally told Merwin I had been experiencing this unpleasant and painful sensation for a while. Merwin called our doctor, who wasn't able to see me till the end of the day—8 p.m. Neither the EKG nor listening to my heart indicated anything wrong, but I will have an echo cardiogram on Monday. After examining me, Dr. M. said, "I promised your son [he meant Harvey] that I would take good care of you, and I assured him that I would be as vigilant about you as I would be for my own mother.” He also mentioned that the trial meant a great deal to him, professionally, as well as to me personally.

The infusion is called GC 1008, Not too helpful a name. But it is not chemo (Dr. M. told me to stop the Hydrea] when we began the preliminary examinations a few weeks ago; My drug is a protein antibody, infused. With luck it will reduce my spleen, which is now so large I can't tie my sneakers, and reduce the fibrosis in my bone marrow. I am proud to be the first to be exposed to this drug for myelofibrosis and glad that it has already been tried on other fibrotic conditions (e.g. liver, kidney).

As usual, everyone is very good to me. Alice hovered over me to make sure everything was going well. Amy came in to say hello and bring goodies. I go again next Thursday, but no infusion, just an examination. But I am call Dr. M.'s cell phone if anything untoward shows up—especially on my skin.

Now to backtrack a little: We went to NYC on the weekend and met Michelle for dinner and the next day met her twin, Rachael, for brunch, along with Tony, a great friend of the family, and his dance partner Meta. I found myself to be so weak that I could not do more: no walk to our lovely Bryant Park, all dolled up for Winter. At the moment I feel more energized, I suppose by the excitement of the trial.


Yesterday, a somewhat small group of friends met for our monthly reading session. Supper was at Kiraku, for which Merwin joined us, and then our meeting. I read something lame, but at least I wrote. Everyone else had wonderful, moving pieces. Kathryn wrote about her visit to Turkey with Antonio, Barbara about Ruby, Anna about her gifted mother and others, Toby about the bible and the incidence of verbal variations among the texts. Meta read her own work and that of her students in her Goddess class.

Now to supper!

Love to all,
Bernice

Time speeds by

At the top, Itzik and Laika. They died very young, leaving four children, two of whom are still alive in their 90s. Cate, who is never far out of my mind, was a great granddaughter of this pair, whom she never knew, of course. Long story.

Dear Friends and Family,

From what we know, we are on for the trial, which might start next week or the week after. I am eager to go into the City this weekend to see the sights. It may be difficult to go to Mt. Sinai every other Thursday and also go to the apartment on weekends. We'll see. Since my platelets were way down this week, who knows what will happen.

We did go to the opera and enjoyed it greatly. The New Yorker reviewer is a bit down on the Met, but we are grateful for the close-by HD recordings. He doesn't like the direction of the operas, and he thinks the HD versions will kill opera elsewhere. Sigh. Hard to think of that when it has become so easy for us to participate in something meaningful to us. When we left the theater at about 5 p.m. it was snowing and very very windy. Merwin had to remove lots of snow from the car and then come get me and my wheelie, both huddled behind a wall. There's always a bit of excitement about the first snow—but very unexpected in October: climate change? The drive home was beautiful, if a little hazardous with a fallen tree.

Our older sons called on Sunday to see if we were suffering from the effects of the storm. They lost power, but we lost only heat, for some reason. Merwin and I tried to walk at the beach but soon turned back from the frigid and powerful wind. Later that day I finished screening the Patrick Stewart Macbeth and writing extensive notes, and my aim is to write a lucid paragraph before Laury comes to work with me tomorrow, Friday.

Monday, Joan called and asked if lunch would be a possibility: YES! We went to Kiraku, and our meals were excellent (we shared a bit). It's the best. And they know me there. Later there was Halloween, and we are sure that parents are bringing kids to our neighborhood because we have very few of our own children here these days. Merwin did the honors and I watched them come up the walk. Sammy was a favorite with all, who wanted to know if he was real or not. Well, he is real, but not a live dog.

Tuesday and Thursday Boeta came, and we are getting along fine. We walked at the water, which she enjoys. I like to keep her happy. After our walks, I led her through some kitchen work, or she led me, and then exercises: I didn't get through the whole cycle today—too fagged.

Dave made us a delicious kugle yesterday afternoon, and we will be having seconds tonight when Lincoln comes. He's on his way now.

That's all folks!



Love,
Bernice