Dear Everyone,
Merwin and I were watching the Newshour on PBS as is our wont every weekday evening, and we were thrilled to see that Marie Ponsot, poet, teacher, mentor, scholar was honored on the occasion of her 88th birthday for her poetry. They left out all her myriad achievements in so many arenas, but we saw her in her NYC garden, on the street walking briskly, in her book-lined study writing a poem in long hand on a yellow pad, displaying photos of her fantastic family (7 children, countless grandchildren and great-grandchildren), and reading some poems from her newest book of poems. They didn't show her in her classrooms, where she still teaches writers, and that would have been something to capture for the ages.
I met Marie in 1969 at Queens College, where she was the single most influence on my teaching and approach to students. I am proud that I nominated her book Beat Not the Poor Desk, co-authored with a colleague, for the Mina Shaunghassey Award (which she received) given to the outstanding book on teaching by the Modern Language Association. The award-winning book is well worth reading at every level of teaching. It is about empowering students and joining with them in the process of writing and listening.
Marie was also an excellent scholar, and in courses I taught in medieval literature I would invite her to share her wisdom about Marie de France, whose poems she had translated.
So Seeing Marie on TV was a nice ending to the day. It began well enough too, with my first trial of wrist weights for the gym class, to avoid using my sore thumbs. I had to ask Murray, who stands next to me, to tighten them, but he is so accommodating, I don't think he minded. Then coffee at Gila's cafe with Elaine, Florence, and Gloria from the class.
The trip to the hem was a bit stressful. The verdict is that I have reached the last stage of bone marrow productivity, the spent stage. The good news is that I go off the thalidomide for 3 days and get a blood transfusion at Long Island Jewish Hospital on Wednesday a.m. Maybe 3 days without the thalidomide will give me a rest. And maybe the blood will beef me up. My hem will call Dr. Raza at St Vincent's CCC to see if there are any other choices available. My platelets have gone up a little but not enough to get me into the INCYTE trial. What I most wish for is continued productivity and joy in work and play, people and places, in whatever time I have left.
Here is a recipe from Jessica:
Mash steamed cauliflower with an electric hand mixer; add a little smart balance, salt, pepper, and garlic powder. For an extra touch add non-fat yogurt and fresh chopped chives.
Thanks Jessica. I think I will include any recipes that people send to me, without bothering to ask permission.
Love to all,
Bernice
Monday, November 30, 2009
Sunday, November 29, 2009
Stirring day
Dear Friends,
The morning was taken up by an unveiling ceremony for our friend Beverly Freierman: it's a Jewish custom to unveil the headstone about 11 months after the death of anyone. The occasion brought back a flood of memories. I could hear Beverly's hoarse voice, her laugh, and see her expressions. We were college mates at Hofstra, in their evening program. She was about 10 years older than I was, very bright, full of energy. All six of her children were there today as well as many grandchildren, cousins and other relatives. I had the feeling that this would be the last time I would see these good and interesting people. The Dzens went with us; Eli Dzen and Beverly were cousins, though we met the Dzens long after we knew Beverly and her husband Homo. Both Beverly and Homo played the mandolin, he as an accomplished and brilliant soloist, she as a member of a mandolin orchestra. No need to tell her whole story here. We shared many occasions, parties, family gatherings, concerts, intimate talks at all levels.
***
Friends have been inspired by the recipes I have posted to try them or to suggest recipes of their own. Sons Dave and Lincoln made blintzes for a party, and the result was stupendous Dave says.
Here's a note from Sami:
Now when I find an interesting food project I also think of you and want
to tell you about it. One result of checking your blog frequently.
I had about a third of a bottle of dry red wine way past its prime, and
instead of tossing it, I put it in a small skillet with some raisins and
a few juniper berries. i let it cook down until it was syrupy, then
refrigerated it.
I think it's delicious. So far I've just had a teaspoonful as a snack,
added it to a small bowl of yoghurt, and had it as a relish with some
chicken and turkey.
(I started eating chicken and turkey when I discovered Stone Barn Farm in
Westchester, wonderful place. I buy eggs. poultry and vegetables from
them.)
http://www.stonebarnscenter.org/
I only buy Newman's Own organic raisins, (they have great prunes too).
Recently I've been using juniper berries in a variety of things, starting
when I looked up recipes for chicken and turkey in Bittman's book "How To
Cook Everything". Great book.
The turkey recipe uses juniper berries and orange peel, among other things.
Thanks for adding to the store of recipes, Sami.
***
Tomorrow I see my doctor, and given the negative effects the T&P are having on me I am hoping she will agree to take me off of them. Do I really want to use the time remaining feeling so rotten? It would be different if the meds would actually lead to something positive. Since there is no cure, quality of life has to be paramount.
I am continuing to limp along on hamletworks.org, but that's about all I can handle right now.
Still, I have to report that there is a smile on my face because I know that so many are listening to me, complaints and all.
Love to all,
Bernice
The morning was taken up by an unveiling ceremony for our friend Beverly Freierman: it's a Jewish custom to unveil the headstone about 11 months after the death of anyone. The occasion brought back a flood of memories. I could hear Beverly's hoarse voice, her laugh, and see her expressions. We were college mates at Hofstra, in their evening program. She was about 10 years older than I was, very bright, full of energy. All six of her children were there today as well as many grandchildren, cousins and other relatives. I had the feeling that this would be the last time I would see these good and interesting people. The Dzens went with us; Eli Dzen and Beverly were cousins, though we met the Dzens long after we knew Beverly and her husband Homo. Both Beverly and Homo played the mandolin, he as an accomplished and brilliant soloist, she as a member of a mandolin orchestra. No need to tell her whole story here. We shared many occasions, parties, family gatherings, concerts, intimate talks at all levels.
***
Friends have been inspired by the recipes I have posted to try them or to suggest recipes of their own. Sons Dave and Lincoln made blintzes for a party, and the result was stupendous Dave says.
Here's a note from Sami:
Now when I find an interesting food project I also think of you and want
to tell you about it. One result of checking your blog frequently.
I had about a third of a bottle of dry red wine way past its prime, and
instead of tossing it, I put it in a small skillet with some raisins and
a few juniper berries. i let it cook down until it was syrupy, then
refrigerated it.
I think it's delicious. So far I've just had a teaspoonful as a snack,
added it to a small bowl of yoghurt, and had it as a relish with some
chicken and turkey.
(I started eating chicken and turkey when I discovered Stone Barn Farm in
Westchester, wonderful place. I buy eggs. poultry and vegetables from
them.)
http://www.stonebarnscenter.org/
I only buy Newman's Own organic raisins, (they have great prunes too).
Recently I've been using juniper berries in a variety of things, starting
when I looked up recipes for chicken and turkey in Bittman's book "How To
Cook Everything". Great book.
The turkey recipe uses juniper berries and orange peel, among other things.
Thanks for adding to the store of recipes, Sami.
***
Tomorrow I see my doctor, and given the negative effects the T&P are having on me I am hoping she will agree to take me off of them. Do I really want to use the time remaining feeling so rotten? It would be different if the meds would actually lead to something positive. Since there is no cure, quality of life has to be paramount.
I am continuing to limp along on hamletworks.org, but that's about all I can handle right now.
Still, I have to report that there is a smile on my face because I know that so many are listening to me, complaints and all.
Love to all,
Bernice
Saturday, November 28, 2009
Amazing grace
Hello everyone,
Energy was low these 24 hours or so in the City. So it amazes me that when I entered the Allen Room at the NYPL and saw a few volumes of TLS (The Times Literary Supplement) waiting for me on my shelf, I suddenly felt much better, ready to work. Well "work" is perhaps a misnomer; ready to enjoy the sometimes acid remarks scholars make about each other's work. It amuses me that someone who seems to have a solid reputation (even if somewhat kooky) as G. Wilson Knight should write to TLS to complain about being overlooked.
"Oh, so you felt that too!" I think to myself. Anyway, I spent a lovely hour in the room capturing some notes.
Afterward we went to Lincoln Center for a concert at Philharmonic. We have series tickets. I can't say too much about the concert. It was OK, but nothing to get me to stand and ovate. To save energy we went by cab, meeting our friend Naomi there. We followed up with a light supper (which turned out to be very ample) at Josephina's across from Lincoln Center. Then another cab ride to the LIRR, where we managed to make the train that was about to leave.
Here we are a little over 24 hours later, but it seems as if we have been gone for a couple of days at least. The change in place makes for a change in time perception. I am reading the warnings for thalidomide; besides warnings to pregnant women, the label lists all my symptoms: fatigue especially. Since there is only a 30% chance that it will reduce my spleen, and since it does nothing to prolong life, is it worth wasting the time I have with this miserable tiredness, so unpredictable, sometimes in the morning, sometimes in the evening, never allowing for plans? Or if I make plans, as we did today, I have to push through somehow in spite of being drawn irresistibly to the bed. I have started on the 2nd month of the 3-month trial.
There is a woman on the MPD list who strokes her big spleen daily, thanking it for all the hard work it is doing. And indeed we do not know everything the spleen accomplishes for those of us with MPDs. Maybe smaller is not always better.
Did I tell you about my suspenders, ordered through the Internet? They help to keep my jeans up now that I have no waistline. I am happy with them. Small favors help.
Love to all,
Bernice
Energy was low these 24 hours or so in the City. So it amazes me that when I entered the Allen Room at the NYPL and saw a few volumes of TLS (The Times Literary Supplement) waiting for me on my shelf, I suddenly felt much better, ready to work. Well "work" is perhaps a misnomer; ready to enjoy the sometimes acid remarks scholars make about each other's work. It amuses me that someone who seems to have a solid reputation (even if somewhat kooky) as G. Wilson Knight should write to TLS to complain about being overlooked.
"Oh, so you felt that too!" I think to myself. Anyway, I spent a lovely hour in the room capturing some notes.
Afterward we went to Lincoln Center for a concert at Philharmonic. We have series tickets. I can't say too much about the concert. It was OK, but nothing to get me to stand and ovate. To save energy we went by cab, meeting our friend Naomi there. We followed up with a light supper (which turned out to be very ample) at Josephina's across from Lincoln Center. Then another cab ride to the LIRR, where we managed to make the train that was about to leave.
Here we are a little over 24 hours later, but it seems as if we have been gone for a couple of days at least. The change in place makes for a change in time perception. I am reading the warnings for thalidomide; besides warnings to pregnant women, the label lists all my symptoms: fatigue especially. Since there is only a 30% chance that it will reduce my spleen, and since it does nothing to prolong life, is it worth wasting the time I have with this miserable tiredness, so unpredictable, sometimes in the morning, sometimes in the evening, never allowing for plans? Or if I make plans, as we did today, I have to push through somehow in spite of being drawn irresistibly to the bed. I have started on the 2nd month of the 3-month trial.
There is a woman on the MPD list who strokes her big spleen daily, thanking it for all the hard work it is doing. And indeed we do not know everything the spleen accomplishes for those of us with MPDs. Maybe smaller is not always better.
Did I tell you about my suspenders, ordered through the Internet? They help to keep my jeans up now that I have no waistline. I am happy with them. Small favors help.
Love to all,
Bernice
Friday, November 27, 2009
Two beautiful days
For close to 48 hours, we had the pleasure of being with family. Merwin and I arrived in CT on Wed. in time for supper. My spinach pie was not a great success, though people who hadn't tasted the first attempt didn't know that. Now I must make it again. There were a couple of problems: I didn't get exactly the right cheeses, and I had selected baby spinach to save the time of stemming the older leaves. Not a good idea: the baby spinach is OK for salad but virtually tasteless when sauteed. Wed. night there were eight of us, and we enjoyed each other, told stories, joked. I lasted all day!
The price had to be paid, though. The next day, with a much larger crowd, I was a little slow and low. During the day everyone (Except me) made one or two favorite dishes for the evening meal. Our Sandy, a capable organzier, kept things moving while making her own dishes. Calm prevailed. Rachael suggested at the dinner table that we each say what we are grateful for. That was a splendid idea. I said I was grateful that all five of my grandchildren, all four of my children, both spouses and one machitanista (mother of Debbie) were there. It is the 1st time since 2001 that all the grandchildren have been together. The 5 (two different families) range from Laura, 26, to Sabrina, 23, with the twins Rachael and Michelle 24 and our grandson Daniel 25 in between.
Then this morning, we met Arthur and family, our sons Lincoln and Dave, for breakfast at the motel where we were all staying. A little quiet time before separating.
Now we are getting ready to go to the City. We have concert tickets for tomorrow and decided it would be best to divide the trip, going in today and then coming home tomorrow night.
More med news on Monday. For now I am wondering if the side effects are worth the effort.
I hope you all had a great Thanksgiving. Wishing you the very best for this holiday season.
Love,
Bernice
The price had to be paid, though. The next day, with a much larger crowd, I was a little slow and low. During the day everyone (Except me) made one or two favorite dishes for the evening meal. Our Sandy, a capable organzier, kept things moving while making her own dishes. Calm prevailed. Rachael suggested at the dinner table that we each say what we are grateful for. That was a splendid idea. I said I was grateful that all five of my grandchildren, all four of my children, both spouses and one machitanista (mother of Debbie) were there. It is the 1st time since 2001 that all the grandchildren have been together. The 5 (two different families) range from Laura, 26, to Sabrina, 23, with the twins Rachael and Michelle 24 and our grandson Daniel 25 in between.
Then this morning, we met Arthur and family, our sons Lincoln and Dave, for breakfast at the motel where we were all staying. A little quiet time before separating.
Now we are getting ready to go to the City. We have concert tickets for tomorrow and decided it would be best to divide the trip, going in today and then coming home tomorrow night.
More med news on Monday. For now I am wondering if the side effects are worth the effort.
I hope you all had a great Thanksgiving. Wishing you the very best for this holiday season.
Love,
Bernice
Wednesday, November 25, 2009
Thanksgiving thoughts
First of all, I feel thankful that the new blood tests I had came out better than they looked the other day. The WBC is down to 130, from 161 (far above the normal range of 4-11, but still better for me) and platelets stayed about 63 (normal 140-450), which is better than it seemed from the last test a couple of days ago. The other values are low, and now I have to take iron along with all the other pills but reduce the HU chemo by half. And the hem wants to see me again on Mon.
I am thankful that I am feeling well, happy and energetic this morning, unlike yesterday when I had to spend all available time in bed, barely rousing myself to get to the dentist for my teeth cleaning session with Yvonne. She said that my mouth looked good, and that is always a good indicator of health.
After I completed the spinach pie for tonight's dinner, we went to the Rock and Roll movie, and that was fun.
Now we are getting ready to take the drive to Connecticut, eager to see the family; sad that Sandy's parents and her sister will not be there, but thankful that we can have this holiday with the others who will be with us.
As a mark of hopefulness, I took a summer skirt into the new tailor in town, and paid $20 to have the elastic replaced and some minor repair. I intend to be here next summer to enjoy wearing it, a lovely silk creation by Irene Nolan, a gifted designer whose clothes I adore.
I hope everything is going well for all of you. I am so grateful for your being there and look forward to your email messages.
Love and happy holidays to all,
Bernice
I am thankful that I am feeling well, happy and energetic this morning, unlike yesterday when I had to spend all available time in bed, barely rousing myself to get to the dentist for my teeth cleaning session with Yvonne. She said that my mouth looked good, and that is always a good indicator of health.
After I completed the spinach pie for tonight's dinner, we went to the Rock and Roll movie, and that was fun.
Now we are getting ready to take the drive to Connecticut, eager to see the family; sad that Sandy's parents and her sister will not be there, but thankful that we can have this holiday with the others who will be with us.
As a mark of hopefulness, I took a summer skirt into the new tailor in town, and paid $20 to have the elastic replaced and some minor repair. I intend to be here next summer to enjoy wearing it, a lovely silk creation by Irene Nolan, a gifted designer whose clothes I adore.
I hope everything is going well for all of you. I am so grateful for your being there and look forward to your email messages.
Love and happy holidays to all,
Bernice
Tuesday, November 24, 2009
Catching up
Dear ones,
It was hard for me to write yesterday because I got some bad news from my hem. She had me come in to retest my bloods, and they were a mess, after only 3 days the platelets had gone down again, and all the other values, except the whites blood count, were low. We have to call this morning to see where the WBC is.
But the day was spent sort of productively. I don't like refined sugars, so to have something sweet at Thanksgiving I made myself my date-nut cookies, let's call them. Here is the recipe:
Mix thoroughly together with enough water to make a thin paste Droste unsweetened cocoa powder and a little vanilla.
Prepare big Persian dates, seeded and folded open to lie flat; place a pecan half on each half, drizzle a little of the bitter choc. on top; you can make a double layer if you like, more dates, more nuts, more choc. Bake at 350 for 10 min. Cool on rack. Not bad. But probably not for those who like real cookies.
I ate a few to test them out thoroughly and then had Merwin wrap them so that I couldn't get to them easily. Nothing wrong with my appetite.
I started the prep for the spinach pie I will bring to our Thanksgiving feast at Harvey and Sandy's. Then I made two Bittman recipes from his 101 list in the NYT. Neither was successful, a surprise for me because I can usually tell when something will be good. I sort of liked one, but poor Merwin didn't at all. He is so good; he manfully ate as much as he could manage. I will make it up to him today By preparing his favorite, what we call Winnie-the-Pooh eggs, an egg fried in a hole in a slice of bread. I jazz this up with some cheese on the second side and some fake bacon. This simple dish pleases greatly, especially when I manage to keep the yoke soft.
I had more energy than usual, and worked on hamletworks.org rather late into the night. I had trouble sleeping, but no night sweats and only one little leg cramp: I think the magnesium is helping on that score. Some of the symptoms of the end game have gone away. I have no fevers, no more weight loss (maybe that's the prednisone?), fewer night sweats: so that's all good.
So as usual, there are ups and downs, and mostly I am smiling, looking forward and also living one day at a time.
Thinking of you all with gratitude for your love and friendship,
Bernice
It was hard for me to write yesterday because I got some bad news from my hem. She had me come in to retest my bloods, and they were a mess, after only 3 days the platelets had gone down again, and all the other values, except the whites blood count, were low. We have to call this morning to see where the WBC is.
But the day was spent sort of productively. I don't like refined sugars, so to have something sweet at Thanksgiving I made myself my date-nut cookies, let's call them. Here is the recipe:
Mix thoroughly together with enough water to make a thin paste Droste unsweetened cocoa powder and a little vanilla.
Prepare big Persian dates, seeded and folded open to lie flat; place a pecan half on each half, drizzle a little of the bitter choc. on top; you can make a double layer if you like, more dates, more nuts, more choc. Bake at 350 for 10 min. Cool on rack. Not bad. But probably not for those who like real cookies.
I ate a few to test them out thoroughly and then had Merwin wrap them so that I couldn't get to them easily. Nothing wrong with my appetite.
I started the prep for the spinach pie I will bring to our Thanksgiving feast at Harvey and Sandy's. Then I made two Bittman recipes from his 101 list in the NYT. Neither was successful, a surprise for me because I can usually tell when something will be good. I sort of liked one, but poor Merwin didn't at all. He is so good; he manfully ate as much as he could manage. I will make it up to him today By preparing his favorite, what we call Winnie-the-Pooh eggs, an egg fried in a hole in a slice of bread. I jazz this up with some cheese on the second side and some fake bacon. This simple dish pleases greatly, especially when I manage to keep the yoke soft.
I had more energy than usual, and worked on hamletworks.org rather late into the night. I had trouble sleeping, but no night sweats and only one little leg cramp: I think the magnesium is helping on that score. Some of the symptoms of the end game have gone away. I have no fevers, no more weight loss (maybe that's the prednisone?), fewer night sweats: so that's all good.
So as usual, there are ups and downs, and mostly I am smiling, looking forward and also living one day at a time.
Thinking of you all with gratitude for your love and friendship,
Bernice
Sunday, November 22, 2009
Finding the bright spots
Dear Friends and family,
What was good? Went to spin where I feel the friendship and even love of friends there (thanks, Gail!). I didn't try to stand this time because last time, though I thought I was being careful when I stood, my thumbs were protesting afterward. Then home for breakfast. I am trying to avoid yogurt for breakfast because it seems to make me tired: lactose intolerance, I guess. I will save it for bedtime. Laury came over and we had fun with Measure for Measure. She read from the Folio while I scanned the text by Kittredge that I have on my computer, and we decided where we should return to the Folio or strike out on our own.Lots of fun: nothing like hearing the words, word for word, to clarify what the problems are that we will have to footnote for students.
She brought a fresh contract with her from the publisher: they thought that perhaps they had neglected to send us one because they ahd not received signed contracts from us. No, they had sent it all right. I just wasn't sure I could undertake and complete this job. Laury and I got into act 2, and then I had to go rest. Lots of fatigue today, but after some nap time, I did some work on the website.
We tried (Merwin is my constant helpmeet in all these decisions) to take the prednisone at night, rather than in the morning. Maybe that would help ward off the fatigue. But one day isn't enough to tell.
Our meals were all leftovers from the previous days, so I had no cooking chores today. Merwin did make a lovely salad.
And Merwin and I have agreed about how we are going to brighten the bedroom. I would like that.I am spending quite a lot of time there these days.
Dare I mention the not-so-bright spot? I had trouble breathing today, along with the fatigue. I think the spleen is growing rather than shrinking and pressing more on my lungs. So every drug I have taken to shrink the spleen has failed so far.
But I have hope that maybe this next month of T&P will help me turn the corner.
Love to all,
Bernice
What was good? Went to spin where I feel the friendship and even love of friends there (thanks, Gail!). I didn't try to stand this time because last time, though I thought I was being careful when I stood, my thumbs were protesting afterward. Then home for breakfast. I am trying to avoid yogurt for breakfast because it seems to make me tired: lactose intolerance, I guess. I will save it for bedtime. Laury came over and we had fun with Measure for Measure. She read from the Folio while I scanned the text by Kittredge that I have on my computer, and we decided where we should return to the Folio or strike out on our own.Lots of fun: nothing like hearing the words, word for word, to clarify what the problems are that we will have to footnote for students.
She brought a fresh contract with her from the publisher: they thought that perhaps they had neglected to send us one because they ahd not received signed contracts from us. No, they had sent it all right. I just wasn't sure I could undertake and complete this job. Laury and I got into act 2, and then I had to go rest. Lots of fatigue today, but after some nap time, I did some work on the website.
We tried (Merwin is my constant helpmeet in all these decisions) to take the prednisone at night, rather than in the morning. Maybe that would help ward off the fatigue. But one day isn't enough to tell.
Our meals were all leftovers from the previous days, so I had no cooking chores today. Merwin did make a lovely salad.
And Merwin and I have agreed about how we are going to brighten the bedroom. I would like that.I am spending quite a lot of time there these days.
Dare I mention the not-so-bright spot? I had trouble breathing today, along with the fatigue. I think the spleen is growing rather than shrinking and pressing more on my lungs. So every drug I have taken to shrink the spleen has failed so far.
But I have hope that maybe this next month of T&P will help me turn the corner.
Love to all,
Bernice
Saturday, November 21, 2009
Nothing New
Dear Blog-visitors,
Nothing much to report today. It began with the same fatigue I have been experiencing for several days; then by about 4 p.m. it had lessened enough to start my working on our website, hamletworks.org. I also made mid-day Turmeric chicken dinner for Merwin and an evening meal (cauliflower a la Rachel: quite good: thanks Rae-Rae). We also went to North Shore Farms, where we gobbled up the free treats (well, I did), and we shopped for next week. We thought going at night might work out better, but it was pretty crowded.
The sad part of the day was phoning our in-laws, Sandy's parents. Sandy's mother, Lee, has been diagnosed with pancreatic cancer and has canceled plans to come to Harvey and Sandy's home for Thanksgiving. I have been thinking that this would be the last time I would see these dear people. I didn't think it would shape up this way. I cry so easily; there I am on the phone, weeping, while Lee and Murray sound like people totally in charge of their emotions, thanking us for thinking of them and phoning.
I am looking forward to working tomorrow with Laury on Measure for Measure. If only I can pull myself together early enough so we can have a full day.
Now back to work on hamletworks.org, if only for an hour.
Fond regards to all,
Bernice
Nothing much to report today. It began with the same fatigue I have been experiencing for several days; then by about 4 p.m. it had lessened enough to start my working on our website, hamletworks.org. I also made mid-day Turmeric chicken dinner for Merwin and an evening meal (cauliflower a la Rachel: quite good: thanks Rae-Rae). We also went to North Shore Farms, where we gobbled up the free treats (well, I did), and we shopped for next week. We thought going at night might work out better, but it was pretty crowded.
The sad part of the day was phoning our in-laws, Sandy's parents. Sandy's mother, Lee, has been diagnosed with pancreatic cancer and has canceled plans to come to Harvey and Sandy's home for Thanksgiving. I have been thinking that this would be the last time I would see these dear people. I didn't think it would shape up this way. I cry so easily; there I am on the phone, weeping, while Lee and Murray sound like people totally in charge of their emotions, thanking us for thinking of them and phoning.
I am looking forward to working tomorrow with Laury on Measure for Measure. If only I can pull myself together early enough so we can have a full day.
Now back to work on hamletworks.org, if only for an hour.
Fond regards to all,
Bernice
Friday, November 20, 2009
Good news
We went to our hem today, and she was pleased that my platelets have gone up, now about 65; if and when they reach 100, I can be considered for the INCYTE trial. The fatigue I have been experiencing is not because the condition has worsened, as I had feared, but because of the thalidomide: it's a side effect. The prednisone is supposed to counteract that, but evidently is not working all that well. Though who knows how bad it would be without the P. So ever onward.
Counting on the pattern of the last several days, with improvement in the evening, we are going to Sabbath supper at our synagogue and maybe even to services after, which is going to be 100% singing. I love the singing. Maybe I can even join in. Being with people is energizing for me, so I have to fight the urge to curl up in a ball on my bed.
Vaughan asked me about the high window in the bedroom I mentioned in yesterday's post. Yes, that is new. We decided to get rid of our inefficient air conditioners and get much more energy efficient ones, with a $1500 rebate (more on that at a later date when and if we actually get that). We got 4 Mitsubishi air conditioners that are almost totally silent because the compressors are outside. They are small units installed high up near the ceiling in 4 rooms. Anyway, the installer had the bright idea of filling the hole that the old air conditioner had made in the bedroom wall with a window of the same size. Who knew what a delight that would be? And the air conditioners help me to breathe when I feel I am suffocating, without filling the room with a rush of air and noise. A good move.
I am gearing up for my work with Laury on Measure for Measure, one of my favorite plays. I still haven't signed the contract, but I think I am ready to do that now. The work on hamletworks.org continues, at least in the thinking-about-it stage. Then there is the essay for the conference in the spring, also on Measure for Measure, which makes real sense, given that we are working on the edition: the essay and the edition will overlap.
We continue to be amazed at our weather and with the leaves that remain green, yellow and even red, now somewhat sparse. I am continuing with the recipes, but will save the next ones for future posts.
Love to all,
Bernice
Counting on the pattern of the last several days, with improvement in the evening, we are going to Sabbath supper at our synagogue and maybe even to services after, which is going to be 100% singing. I love the singing. Maybe I can even join in. Being with people is energizing for me, so I have to fight the urge to curl up in a ball on my bed.
Vaughan asked me about the high window in the bedroom I mentioned in yesterday's post. Yes, that is new. We decided to get rid of our inefficient air conditioners and get much more energy efficient ones, with a $1500 rebate (more on that at a later date when and if we actually get that). We got 4 Mitsubishi air conditioners that are almost totally silent because the compressors are outside. They are small units installed high up near the ceiling in 4 rooms. Anyway, the installer had the bright idea of filling the hole that the old air conditioner had made in the bedroom wall with a window of the same size. Who knew what a delight that would be? And the air conditioners help me to breathe when I feel I am suffocating, without filling the room with a rush of air and noise. A good move.
I am gearing up for my work with Laury on Measure for Measure, one of my favorite plays. I still haven't signed the contract, but I think I am ready to do that now. The work on hamletworks.org continues, at least in the thinking-about-it stage. Then there is the essay for the conference in the spring, also on Measure for Measure, which makes real sense, given that we are working on the edition: the essay and the edition will overlap.
We continue to be amazed at our weather and with the leaves that remain green, yellow and even red, now somewhat sparse. I am continuing with the recipes, but will save the next ones for future posts.
Love to all,
Bernice
Thursday, November 19, 2009
Down and Up
Lately, it's been kind of down with fatigue for a good part of the day and then at least a partial—and often a full—revival later in the day. I would say that was the situation yesterday and today. So it is almost 5:00, and I am smiling.
I cannot tell what is going on with the T&P. The latter is supposed to make me hyper so I have to take it in the a.m.. I wish it would. The effect seems the opposite. Symptoms of the end game have diminished to an extent: no fevers for many days now, often no night sweats, weight seems stabilized. In fact I better be careful because I was so focused on trying not to lose more weight that I was (am) eating much more than I need to. I better go back to more normal eating. Even the cramps seem better with the higher dose of magnesium (400 mg at night). Also I am taking two Tylenol at night. Is the spleen smaller? Very hard to say.
I have been relishing the last red leaves and the yellows on the trees all around here. And the weather has been cooperative, at least till this afternoon when it started raining. They thrill me this year as never before I think. And I am also looking forward to the "bare, ruined choirs," when the trees show their lovely bodies to those with an eye for them. The new window high up in my bedroom lets me see the top leaves of one of the huge evergreens on our property. All great pleasures.
Last night Merwin went with me to a meeting of the Escorts for Planned Parenthood. Since the last murder of a provider, the doctors at Planned Parenthood here felt they needed a real security patrol rather than a couple of men and women volunteers. We volunteer escorts were there last night to find out what we could do in the future for the cause. Unfortunately, there is very little I can do. I had to give up escorting some months back. Other volunteer jobs are labor intensive, so I was able to put down only letter writing as a volunteer job. I am reminded of the many activities of my life that I have had to give up, putting each aside with regret but always finding something to replace them. So may it be for this one also.
Today was another day that began with fatigue, but we were enlivened by a visit from our almost son Rick, who is very dear to us. A former student, he has become a colleague and a friend. He came for a quick lunch and a catch up. His activities are always fascinating.
I am still working my way through the recipe folder: Here's one by my dear (now deceased) mother-in-law, aka Nana, transcribed from the version written in her clear hand:
Nana's Date Nut Bread
Preheat oven to 350
Mix together with a wooden spoon, 3 C flour, 3 t baking powder. 1 baking soda
Mix together 1 egg, 2 T oil, 1 and 1/2 C liquid or water or even orange juice (though I don't think she ever used it). This can be the liquid in which you soak the dates to soften them (if they are very dry only). Add the wet to the dry ingredients. Mix well but do not over mix.
Add 1 and 1/2 C chopped nuts
I C chopped fruit (dates or raisins) or more.
Put batter in one greased loaf pan or in two small greased loaf pans.
Bake 50-60 minutes if using one pan; 40-50 min for small pan. Press top lightly to test for doneness. The toothpick method doesn't work because the mixture is moist.
Enjoy!
Love to all,
Bernice
I cannot tell what is going on with the T&P. The latter is supposed to make me hyper so I have to take it in the a.m.. I wish it would. The effect seems the opposite. Symptoms of the end game have diminished to an extent: no fevers for many days now, often no night sweats, weight seems stabilized. In fact I better be careful because I was so focused on trying not to lose more weight that I was (am) eating much more than I need to. I better go back to more normal eating. Even the cramps seem better with the higher dose of magnesium (400 mg at night). Also I am taking two Tylenol at night. Is the spleen smaller? Very hard to say.
I have been relishing the last red leaves and the yellows on the trees all around here. And the weather has been cooperative, at least till this afternoon when it started raining. They thrill me this year as never before I think. And I am also looking forward to the "bare, ruined choirs," when the trees show their lovely bodies to those with an eye for them. The new window high up in my bedroom lets me see the top leaves of one of the huge evergreens on our property. All great pleasures.
Last night Merwin went with me to a meeting of the Escorts for Planned Parenthood. Since the last murder of a provider, the doctors at Planned Parenthood here felt they needed a real security patrol rather than a couple of men and women volunteers. We volunteer escorts were there last night to find out what we could do in the future for the cause. Unfortunately, there is very little I can do. I had to give up escorting some months back. Other volunteer jobs are labor intensive, so I was able to put down only letter writing as a volunteer job. I am reminded of the many activities of my life that I have had to give up, putting each aside with regret but always finding something to replace them. So may it be for this one also.
Today was another day that began with fatigue, but we were enlivened by a visit from our almost son Rick, who is very dear to us. A former student, he has become a colleague and a friend. He came for a quick lunch and a catch up. His activities are always fascinating.
I am still working my way through the recipe folder: Here's one by my dear (now deceased) mother-in-law, aka Nana, transcribed from the version written in her clear hand:
Nana's Date Nut Bread
Preheat oven to 350
Mix together with a wooden spoon, 3 C flour, 3 t baking powder. 1 baking soda
Mix together 1 egg, 2 T oil, 1 and 1/2 C liquid or water or even orange juice (though I don't think she ever used it). This can be the liquid in which you soak the dates to soften them (if they are very dry only). Add the wet to the dry ingredients. Mix well but do not over mix.
Add 1 and 1/2 C chopped nuts
I C chopped fruit (dates or raisins) or more.
Put batter in one greased loaf pan or in two small greased loaf pans.
Bake 50-60 minutes if using one pan; 40-50 min for small pan. Press top lightly to test for doneness. The toothpick method doesn't work because the mixture is moist.
Enjoy!
Love to all,
Bernice
Tuesday, November 17, 2009
Hooray, a good day
This was a day that I had planned to be in NYC, so in a sense it was an "extra" day for me. I went to a later SPIN class so I could see Tripp, who has given up teaching the 6:30 a.m. class. We were happy to see each other. Leslie, a spinning buddy, had brought me her jell seat because I am forced to sit the whole time to avoid damaging my arthritic thumbs. I feel so part of a community when I am there.
I have gone back to Nova for breakfast, something I enjoyed before my heart surgery and a low-salt diet—which I don't think I have to be on anymore. I think a lot of health measures are beside the point right now. Pleasure is the main thing.
I had two rests during the day, but otherwise it was eventful for me. I communicated with the journal to which I had sent my essay; they wanted it electronically, and I was happy to oblige, but it took some time to go through their whole procedure. And I set myself a new task, inspired by Antoinette, who has written me about girlhood memories of kreplach and other dishes that a Jewish girlfriend's grandmother made. I decided I would go through my 3 x 5 recipe cards and convert them to WORD docs by typing them into the computer. So I can also send one or two to all of you who are reading this. You'll find the recipe for blintzes at the end of this post. It'll take me a while, Antoinette, to get to the K's! The cards are arranged alphabetically.
Merwin suddenly recalled at about 2 p.m. that today is Tues. and thus the free day at some local movie theaters. He picked out "An Education," and we loved it. I was a bit confused at first because I thought we were going to see the one about the rock music off the coast of England, but perhaps we can see that another time. I love Rock & Roll. Merwin doesn't, but ever obliging he'll go with me.
We got home in time for the Leherer Report, and a quick supper of leftovers. Then after a short nap, a visit to the Sea Cliff Village Hall for an art festival. Thank goodness the first presenter was Louise Sharakan, and she did a splendid job of explaining the genesis and development of her art, which was on display, from dyed silk to framed collages and jewelry. It was a delight.
And I was ready for more! We rushed over to Rising Tide, where they opened the locked doors for us, and I got a bunch of good vitamins and herbs that are going to make me feel even better, and now I am sitting here at the computer with a smile on my face. Way past my bed time.
Love to all,
Bernice
Here is the recipe; it's really very simple when you get the hang of it:
Baba's Blintzes
My mother's method was self-taught as far as I know, and I never saw it mentioned in any recipe for blintzes, blini, or the equivalent. The standard recipes tell you to pour batter into a heated pan and swish it around until it covers the bottom. They also tell you to make all the blini and then afterward fill them. My mother did both at once with deft motions.
For the batter, mix together 1 C flour, 2 eggs, a little salt, 1 C water or more to make the batter the consistency of heavy cream. This makes the shell of the blintz; it's a very thin pancake.
For the filling, mix 1 package farmer's cheese (7 oz) with 1 egg.
Heat a small, 6 ½" frying pan in which to make the blinis
Prepare an oblong 9 x13 pan in which you can bake the blintzes by greasing with butter or oil.
Have soft butter on hand to grease the frying pan between each blini.
Preheat oven to 350 if desired. or hold the blintzes for hours in the refrigerator until you are ready to bake them.
Method:
Assemble all ingredients, as above.
1. Heat frying pan and grease with butter applied with a bit of paper towel.
2. Pour batter into pan and immediately pour the batter back into its container. What you will have is a thin shell of pancake with a kind of tail, where you poured it back out.
3. As soon as the pancake has set, release it from the pan and drop it onto a clean plate or towel. 4. Immediately rebutter pan and add batter as before. Adjust the flame so the pancake won't cook too quickly.
5. Now while the pancake is setting, use those couple of minutes to put some cheese into the waiting pancake and fold over sides to make a nice package, finished off with the tongue of batter left by the pouring. Place in the greased oblong pan.
6. By now the shell of the 2nd blintz is ready to be removed. Drop it onto your work space.
Repeat steps 2-5.
And continue until all the batter and all the cheese has been used.
Bake at 350 whenever you are ready. They should be nicely brown on all sides. You may want to turn them over at some point. This recipe should make 12-14 blintzes.
From the community she came from, sugar was not an important ingredient, so her blintzes are unsweetened. But you can serve jam on the side for those with a sweet tooth and sour cream is also nice.
My adaptation, skinless blintzes:
I make the filling as she directed, but with about 3x-4x the amount of cheese and eggs, using at least partly salt-free farmer's cheese. I bake this mixture in a loaf pan and serve it in spoonfuls at brunches, with jam and sour cream on the side.
I have gone back to Nova for breakfast, something I enjoyed before my heart surgery and a low-salt diet—which I don't think I have to be on anymore. I think a lot of health measures are beside the point right now. Pleasure is the main thing.
I had two rests during the day, but otherwise it was eventful for me. I communicated with the journal to which I had sent my essay; they wanted it electronically, and I was happy to oblige, but it took some time to go through their whole procedure. And I set myself a new task, inspired by Antoinette, who has written me about girlhood memories of kreplach and other dishes that a Jewish girlfriend's grandmother made. I decided I would go through my 3 x 5 recipe cards and convert them to WORD docs by typing them into the computer. So I can also send one or two to all of you who are reading this. You'll find the recipe for blintzes at the end of this post. It'll take me a while, Antoinette, to get to the K's! The cards are arranged alphabetically.
Merwin suddenly recalled at about 2 p.m. that today is Tues. and thus the free day at some local movie theaters. He picked out "An Education," and we loved it. I was a bit confused at first because I thought we were going to see the one about the rock music off the coast of England, but perhaps we can see that another time. I love Rock & Roll. Merwin doesn't, but ever obliging he'll go with me.
We got home in time for the Leherer Report, and a quick supper of leftovers. Then after a short nap, a visit to the Sea Cliff Village Hall for an art festival. Thank goodness the first presenter was Louise Sharakan, and she did a splendid job of explaining the genesis and development of her art, which was on display, from dyed silk to framed collages and jewelry. It was a delight.
And I was ready for more! We rushed over to Rising Tide, where they opened the locked doors for us, and I got a bunch of good vitamins and herbs that are going to make me feel even better, and now I am sitting here at the computer with a smile on my face. Way past my bed time.
Love to all,
Bernice
Here is the recipe; it's really very simple when you get the hang of it:
Baba's Blintzes
My mother's method was self-taught as far as I know, and I never saw it mentioned in any recipe for blintzes, blini, or the equivalent. The standard recipes tell you to pour batter into a heated pan and swish it around until it covers the bottom. They also tell you to make all the blini and then afterward fill them. My mother did both at once with deft motions.
For the batter, mix together 1 C flour, 2 eggs, a little salt, 1 C water or more to make the batter the consistency of heavy cream. This makes the shell of the blintz; it's a very thin pancake.
For the filling, mix 1 package farmer's cheese (7 oz) with 1 egg.
Heat a small, 6 ½" frying pan in which to make the blinis
Prepare an oblong 9 x13 pan in which you can bake the blintzes by greasing with butter or oil.
Have soft butter on hand to grease the frying pan between each blini.
Preheat oven to 350 if desired. or hold the blintzes for hours in the refrigerator until you are ready to bake them.
Method:
Assemble all ingredients, as above.
1. Heat frying pan and grease with butter applied with a bit of paper towel.
2. Pour batter into pan and immediately pour the batter back into its container. What you will have is a thin shell of pancake with a kind of tail, where you poured it back out.
3. As soon as the pancake has set, release it from the pan and drop it onto a clean plate or towel. 4. Immediately rebutter pan and add batter as before. Adjust the flame so the pancake won't cook too quickly.
5. Now while the pancake is setting, use those couple of minutes to put some cheese into the waiting pancake and fold over sides to make a nice package, finished off with the tongue of batter left by the pouring. Place in the greased oblong pan.
6. By now the shell of the 2nd blintz is ready to be removed. Drop it onto your work space.
Repeat steps 2-5.
And continue until all the batter and all the cheese has been used.
Bake at 350 whenever you are ready. They should be nicely brown on all sides. You may want to turn them over at some point. This recipe should make 12-14 blintzes.
From the community she came from, sugar was not an important ingredient, so her blintzes are unsweetened. But you can serve jam on the side for those with a sweet tooth and sour cream is also nice.
My adaptation, skinless blintzes:
I make the filling as she directed, but with about 3x-4x the amount of cheese and eggs, using at least partly salt-free farmer's cheese. I bake this mixture in a loaf pan and serve it in spoonfuls at brunches, with jam and sour cream on the side.
Monday, November 16, 2009
Topsy Turvy
Dear Friends and family,
Everything has been upside down for the last few days. Instead of waking up ready for action and gradually tiring towards the end of the day, I seem to be starting out pretty tired and then picking up steam in the late afternoon. That has happened the last few days. I suspect it has something to do with the meds I am taking, but how or why the situation has changed I don't know. But it does lend itself to interesting possibilities for planning evening activities.
Yesterday I wrote about the lovely setting for the concert we attended on Sunday but didn't say anything about the concert itself. It was highly unusual and fascinating. The acoustics in the church lent themselves to the experience. There was a mezzo soprano, Margo Grib, who not only sang but also played a vielle, a violin-like instrument, sometimes both at once, which rather amazed us. There were two recorder players, Daphna Mor (who also played a weird instrument called a nai, very breathy, not forceful), and Nina Stern (who also played a chalumeau); Haig Manoogian, an oud player; and David Buckbut, percussion. At one point they all said something about at least one of their instruments, explaining its likenesses and differences from the instruments more familiar to us. Buckbut charmingly explained his especial affection for his tambourine-like instrument--not the kindergarten variety at all, and my, he could get lots of different sounds out of it. Three of the five were not native Americans. They played 13th- and 14th-century music: Latin, Armenian, Spanish and English. Fascinating, lovely sexy. That's probably more than you want to know, but this blog is at last partly a diary, a memory-keeper for me.
I went to another session with the PT for my thumbs today, arriving there exactly 5 minutes from the time I pulled out of the garage. I like that. The session itself helps me feel better. But still a wrong move and I let out a screech.
See you later,
Bernice
Everything has been upside down for the last few days. Instead of waking up ready for action and gradually tiring towards the end of the day, I seem to be starting out pretty tired and then picking up steam in the late afternoon. That has happened the last few days. I suspect it has something to do with the meds I am taking, but how or why the situation has changed I don't know. But it does lend itself to interesting possibilities for planning evening activities.
Yesterday I wrote about the lovely setting for the concert we attended on Sunday but didn't say anything about the concert itself. It was highly unusual and fascinating. The acoustics in the church lent themselves to the experience. There was a mezzo soprano, Margo Grib, who not only sang but also played a vielle, a violin-like instrument, sometimes both at once, which rather amazed us. There were two recorder players, Daphna Mor (who also played a weird instrument called a nai, very breathy, not forceful), and Nina Stern (who also played a chalumeau); Haig Manoogian, an oud player; and David Buckbut, percussion. At one point they all said something about at least one of their instruments, explaining its likenesses and differences from the instruments more familiar to us. Buckbut charmingly explained his especial affection for his tambourine-like instrument--not the kindergarten variety at all, and my, he could get lots of different sounds out of it. Three of the five were not native Americans. They played 13th- and 14th-century music: Latin, Armenian, Spanish and English. Fascinating, lovely sexy. That's probably more than you want to know, but this blog is at last partly a diary, a memory-keeper for me.
I went to another session with the PT for my thumbs today, arriving there exactly 5 minutes from the time I pulled out of the garage. I like that. The session itself helps me feel better. But still a wrong move and I let out a screech.
See you later,
Bernice
Sunday, November 15, 2009
More ups and Downs
Dear blog readers,
I noticed that yesterday I said DOW instead of DOWN. Well, the DOW is down from where it used to be but going up, so maybe that is a good sign.
The best things happening today so far are SPIN, which I got through again. A buddy there has a jell seat for me to cushion my tush because I have to sit the whole time (to save my thumbs). People are so good!
The next good thing was a concert we went to this afternoon. This series of Baroque music is held at the church in Oyster Bay that Teddy Roosevelt attended when he and his family were at their lovely Oyster Bay home, and it has memorabilia about him and his family. It's a modest church, though, easy to be in. I notice that certain visual delights catch my eye, for instance the reflection of a stained glass window, brighter than the original, caught in the mirror on the organ. Outside at intermission, I saw flowers still blooming in a sheltered spot, including dahlias, which in Merwin's plot turned brown over a week ago. Feasts for the eyes.
A funny thing was reading this morning the label on my prednisone bottle and learning--I swear for the first time--that I am to take 3 of these every morning. I am sure I never heard this direction before. Merwin is certain he told me. So what has this done? Two weeks or more with the wrong dose. And now the right dose: will that be better? Will I feel better or worse?
It'll be a quiet evening with some news on TV and maybe a show or two, then early to bed. I have had two naps already today, not sleep really, but rest with eyes closed. Peaceful.
Goodnight and sweet dreams to all,
Love,
Bernice
I noticed that yesterday I said DOW instead of DOWN. Well, the DOW is down from where it used to be but going up, so maybe that is a good sign.
The best things happening today so far are SPIN, which I got through again. A buddy there has a jell seat for me to cushion my tush because I have to sit the whole time (to save my thumbs). People are so good!
The next good thing was a concert we went to this afternoon. This series of Baroque music is held at the church in Oyster Bay that Teddy Roosevelt attended when he and his family were at their lovely Oyster Bay home, and it has memorabilia about him and his family. It's a modest church, though, easy to be in. I notice that certain visual delights catch my eye, for instance the reflection of a stained glass window, brighter than the original, caught in the mirror on the organ. Outside at intermission, I saw flowers still blooming in a sheltered spot, including dahlias, which in Merwin's plot turned brown over a week ago. Feasts for the eyes.
A funny thing was reading this morning the label on my prednisone bottle and learning--I swear for the first time--that I am to take 3 of these every morning. I am sure I never heard this direction before. Merwin is certain he told me. So what has this done? Two weeks or more with the wrong dose. And now the right dose: will that be better? Will I feel better or worse?
It'll be a quiet evening with some news on TV and maybe a show or two, then early to bed. I have had two naps already today, not sleep really, but rest with eyes closed. Peaceful.
Goodnight and sweet dreams to all,
Love,
Bernice
Saturday, November 14, 2009
More ups and Dows
Sat. evening in Glen Head:
Everything went as planned on Thurs: we had a lovely dinner at Curry Dream on 39th between 5th and 6th: I chose a sweet (not too sweet) 9-vegetable curry, shared an order of nan with Merwin, and skipped dessert but had a mango drink instead. Then we went around another corner to the theater at 38th between 5th and 6th, which did indeed accept our TDF vouchers, giving us admission for $9 each, which we had paid in advance. We marveled at the proximity of everything. We keep finding more and more right around this neighborhood of ours.
The play itself, Holy Days, by Sally Nemeth, was beautifully staged and acted by four superb players in a minuscule theater that reminded me of the Shakespeare work of Janet Farrow and Doug Overtoom, whose casts sometimes exceeded the size of the audience. This theater space is used by many companies. We shall certainly try to follow the work of this particular company, Retro Productions, led by Heather E. Cunningham, who also played the older wife in this 1930's dust bowl drama. A little after 9 p.m. we arrived back at our apartment.
The next day, my plans went awry a bit. I could not get myself out of bed to go to the library. I had to conserve energy for a lunch date with a friend, which turned out to be painful because of her difficult situation, and then in the evening, I had the pleasure of introducing the speaker, a good friend, and the respondant at our Columbia Shakespeare Seminar. Our dear Dawn also came to the seminar that evening. I am energized by being with friends, but it was sometimes difficult to keep up the "show." And in the car going back to Glen Head (taken by Laury, dear friend), I simply collapsed.
This morning was no better. Fatigue, fatigue.
Some signs. though, are good. No fevers for many days; no sweats for a few nights. So two of the symptoms of the "end game" as I call it have gone away for the time being. The spleen may or may not be smaller. If it's smaller, it is not by much, because I can't see any difference.
I had a hard time doing what I do best to comfort myself: get to work. I have done a very little so far. Poking at the projects rather than getting down into them.
I did invent another pancake for lunch, a combination of salmon and spinach, which came out very well. It seems that I am always making pancakes. But they are easy and delicious.
Merwin goes to his book group tonight, and I will probably go to bed with The New Yorker, or a movie on TV, if I can find one. I look forward to more energy tomorrow morning. Mornings have almost always been a good time for me. It's disappointing to start the day like these last two days, but I will hope for better.
I go back to the doctor on Friday, and perhaps the blood tests will give us some information about how the T&P are working.
Thinking of all of you who are following my blog—and all who cannot stand reading such things, too—with gratitude and affection,
Love,
Bernice
Everything went as planned on Thurs: we had a lovely dinner at Curry Dream on 39th between 5th and 6th: I chose a sweet (not too sweet) 9-vegetable curry, shared an order of nan with Merwin, and skipped dessert but had a mango drink instead. Then we went around another corner to the theater at 38th between 5th and 6th, which did indeed accept our TDF vouchers, giving us admission for $9 each, which we had paid in advance. We marveled at the proximity of everything. We keep finding more and more right around this neighborhood of ours.
The play itself, Holy Days, by Sally Nemeth, was beautifully staged and acted by four superb players in a minuscule theater that reminded me of the Shakespeare work of Janet Farrow and Doug Overtoom, whose casts sometimes exceeded the size of the audience. This theater space is used by many companies. We shall certainly try to follow the work of this particular company, Retro Productions, led by Heather E. Cunningham, who also played the older wife in this 1930's dust bowl drama. A little after 9 p.m. we arrived back at our apartment.
The next day, my plans went awry a bit. I could not get myself out of bed to go to the library. I had to conserve energy for a lunch date with a friend, which turned out to be painful because of her difficult situation, and then in the evening, I had the pleasure of introducing the speaker, a good friend, and the respondant at our Columbia Shakespeare Seminar. Our dear Dawn also came to the seminar that evening. I am energized by being with friends, but it was sometimes difficult to keep up the "show." And in the car going back to Glen Head (taken by Laury, dear friend), I simply collapsed.
This morning was no better. Fatigue, fatigue.
Some signs. though, are good. No fevers for many days; no sweats for a few nights. So two of the symptoms of the "end game" as I call it have gone away for the time being. The spleen may or may not be smaller. If it's smaller, it is not by much, because I can't see any difference.
I had a hard time doing what I do best to comfort myself: get to work. I have done a very little so far. Poking at the projects rather than getting down into them.
I did invent another pancake for lunch, a combination of salmon and spinach, which came out very well. It seems that I am always making pancakes. But they are easy and delicious.
Merwin goes to his book group tonight, and I will probably go to bed with The New Yorker, or a movie on TV, if I can find one. I look forward to more energy tomorrow morning. Mornings have almost always been a good time for me. It's disappointing to start the day like these last two days, but I will hope for better.
I go back to the doctor on Friday, and perhaps the blood tests will give us some information about how the T&P are working.
Thinking of all of you who are following my blog—and all who cannot stand reading such things, too—with gratitude and affection,
Love,
Bernice
Thursday, November 12, 2009
Conference URL +
Hooray, I figured out how to add to my blog from our NYC digs. Not really hard at all. We're going to an Indian restaurant soon and then we're trying a very close-by theater, which may accept our TDF vouchers. We're up for this, having had naps this afternoon.
When we arrived, we found that the workers were right outside our big window: they had splashed dirty water onto our window sill, but Merwin cleaned that up quickly. In spite of having them there,we went ahead with the naps. They are nicely discreet about it. I watched the sky turn from grey to a deep deep blue as lights in the wonderful buildings around us (actually 2 blocks away, but in view across Bryant Park) went on.
What a delight to be here. I scrabbled a lunch for Merwin out of what we had in the freezer. That's fun too.
More later,
Bernice
For some reason, in my posting yesterday, the URL for the MPD conference web-cast did not come through. I am trying again:
http://www.vodium.com/login.asp?lib=pn100788
Keep in mind that this is a record of an all-day conference, with many presentations. Skip around a lot—if you go there at all.
Off to the City today; will write again on the weekend.
Love,
Bernice
When we arrived, we found that the workers were right outside our big window: they had splashed dirty water onto our window sill, but Merwin cleaned that up quickly. In spite of having them there,we went ahead with the naps. They are nicely discreet about it. I watched the sky turn from grey to a deep deep blue as lights in the wonderful buildings around us (actually 2 blocks away, but in view across Bryant Park) went on.
What a delight to be here. I scrabbled a lunch for Merwin out of what we had in the freezer. That's fun too.
More later,
Bernice
For some reason, in my posting yesterday, the URL for the MPD conference web-cast did not come through. I am trying again:
http://www.vodium.com/login.asp?lib=pn100788
Keep in mind that this is a record of an all-day conference, with many presentations. Skip around a lot—if you go there at all.
Off to the City today; will write again on the weekend.
Love,
Bernice
Wednesday, November 11, 2009
Cures, food, movie, MPD conference
Dear friends and family,
Joan Lehn told me about eating a teaspoonful of mustard to combat cramps. It seemed to work twice, but I wasn't sure whether it was the walk from the bedroom to the kitchen and back that did it or the mustard. Anyway, the 3rd time it did not work. I am trying the magnesium my Dr. suggested, but so far that hasn't worked either. This does not happen every night, and I can't tell what sets it off.
Another recipe to share: At North Shore Farms as we arrived the other afternoon, big beautiful cauliflowers, absolutely pristinely white, were being loaded for display. I picked one, and cooked all of it, using some as a side vegetable that night. Then I pureed a bunch for a soup I was making for today (Wed.). There was still quite a lot of cauliflower left, so I thought of combining the English egg recipe with the cauliflower: Easy, ready in minutes. I layered the remaining cauliflower in the bottom of a casserole, topped it with 4 eggs, cheese, and a little half and half, some pepper. I covered the casserole and microwaved for 10 minutes: that's for hard eggs. Om the meantime, I heated the broiler, and when the eggs were done, I put them under the broiler to brown for about 2 minutes. Delicious! A great success.
We did go to the movie, A Serious Man, for which we paid nothing thanks to our optonline card, and we found the Roslyn movie theater more comfortable than we had remembered. I loved the opening: the Yiddish, which I could understand (it was subtitled but did not exactly capture the flavor), the dour wife, the happy husband, the guest. Moments were funny, painful, sad, unbelievable. In retrospect it was a misogynistic film: every woman in it was someone you wouldn't want to know. But on reflection I had to admit that this was true for every one of the men also. Nevertheless, it was what I would call "a good movie experience."
Today I had my bi-annual visit to my dermatologist, wondering why I was bothering. But I made an appointment for the next visit too. Then to the PT for a 3rd session. My thumbs do feel better. I screech in pain only when I do something I shouldn't, but I can't always tell ahead of time what that something is.
I'll be in the City for a couple of days, so unless I learn how to write my blog from there, you'll hear from me on the weekend.
Love to all,
Bernice
Anyone who wants or needs to know about MPD diseases, of which I have one or two (not sure), might be interested in this webcast: it was a long day of lectures and Q&As, so you'd best skim:
The presentations and Q&A from the 5th Annual MPD Foundation & CR&T Fund MPD Symposium are now available on the MPD Foundation's website.
For security you will be asked to provide your email and name before viewing the web-cast. This information will remain private and will not be shared.
Whether you were able to attend or not, please take advantage of this opportunity to learn from MPD experts.
Joan Lehn told me about eating a teaspoonful of mustard to combat cramps. It seemed to work twice, but I wasn't sure whether it was the walk from the bedroom to the kitchen and back that did it or the mustard. Anyway, the 3rd time it did not work. I am trying the magnesium my Dr. suggested, but so far that hasn't worked either. This does not happen every night, and I can't tell what sets it off.
Another recipe to share: At North Shore Farms as we arrived the other afternoon, big beautiful cauliflowers, absolutely pristinely white, were being loaded for display. I picked one, and cooked all of it, using some as a side vegetable that night. Then I pureed a bunch for a soup I was making for today (Wed.). There was still quite a lot of cauliflower left, so I thought of combining the English egg recipe with the cauliflower: Easy, ready in minutes. I layered the remaining cauliflower in the bottom of a casserole, topped it with 4 eggs, cheese, and a little half and half, some pepper. I covered the casserole and microwaved for 10 minutes: that's for hard eggs. Om the meantime, I heated the broiler, and when the eggs were done, I put them under the broiler to brown for about 2 minutes. Delicious! A great success.
We did go to the movie, A Serious Man, for which we paid nothing thanks to our optonline card, and we found the Roslyn movie theater more comfortable than we had remembered. I loved the opening: the Yiddish, which I could understand (it was subtitled but did not exactly capture the flavor), the dour wife, the happy husband, the guest. Moments were funny, painful, sad, unbelievable. In retrospect it was a misogynistic film: every woman in it was someone you wouldn't want to know. But on reflection I had to admit that this was true for every one of the men also. Nevertheless, it was what I would call "a good movie experience."
Today I had my bi-annual visit to my dermatologist, wondering why I was bothering. But I made an appointment for the next visit too. Then to the PT for a 3rd session. My thumbs do feel better. I screech in pain only when I do something I shouldn't, but I can't always tell ahead of time what that something is.
I'll be in the City for a couple of days, so unless I learn how to write my blog from there, you'll hear from me on the weekend.
Love to all,
Bernice
Anyone who wants or needs to know about MPD diseases, of which I have one or two (not sure), might be interested in this webcast: it was a long day of lectures and Q&As, so you'd best skim:
The presentations and Q&A from the 5th Annual MPD Foundation & CR&T Fund MPD Symposium are now available on the
For security you will be asked to provide your email and name before viewing the web-cast. This information will remain private and will not be shared.
Whether you were able to attend or not, please take advantage of this opportunity to learn from MPD experts.
Tuesday, November 10, 2009
Good and bad go together, of course
Hi, friends and family,
I know that I am doing better these days because I have no fevers! Lately, it has really been normal 98.6 or lower. I used to consider anything under 100 normal, but this is a new development and leads to more energy, less fatigue, and when I am tired it seems of shorter duration. So hooray. I don't think this has anything to do with T&P because it started to go down before I began the new meds. The swelling in the lower limbs has not reoccured for the last two nights: maybe the spleen is shrinking?
Consider this: a few weeks ago, I wasn't sure that I would be able to go to the Columbia Shakespeare Seminar meeting this coming Friday, but now I am confidant that I can be there, do the introductions of the speakers, and have a good time seeing friends and colleagues. I feel alert and happy.
This morning, I am going to mail the essay I have been working on, and then I am going to try to forget it until I get the word from the journal: accepted; accepted with changes; not accepted. The good thing is that even if it's not accepted, the readers will probably provide some comments that will help me in my next revision. It's so great to get this project out of the way, at least temporarily. It was one of the three jobs I wanted to get done before—you know what. Two out of three are now out of the way.
But of course, I am adding new jobs: I am writing a seminar paper on Measure for Measure for the annual Shakespeare Meeting in the spring. I didn't think that I would be able to attend that when I committed to the paper, but now I am actually thinking that I will be able to be there. How happy I was to attend it last spring, even though I lasted only one day. How great it would be to attend again, especially to see my New Variorum team mates.
And Laury Magnus and I are co-editing Measure for Measure for Focus—my 3rd play for them, and I think Laury's 5th or 6th.
All this is good. What's bad? Well temporarily, I hope, the arthritis in both my thumbs is holding me back. Thanks goodness I never learned to type, so I am still in four-finger mode, never using the thumbs. I am having some dizziness, which is listed as one of the side effects of T&P. So I am a little unsteady on my feet. I appreciate Merwin's arm when we are together, and when we are not I am very cautious about where I step.
I am looking forward to some good things: at last we are taking advantage of Optonline's free Tues. movies and will attend one this afternoon. Tomorrow, Joe D will visit here, and I am looking forward to making lunch for him, Merwin and me. But more about that when it comes.
In the meantime, thanks all for listening; it helps me to know you're there.
Love to all,
Bernice
I know that I am doing better these days because I have no fevers! Lately, it has really been normal 98.6 or lower. I used to consider anything under 100 normal, but this is a new development and leads to more energy, less fatigue, and when I am tired it seems of shorter duration. So hooray. I don't think this has anything to do with T&P because it started to go down before I began the new meds. The swelling in the lower limbs has not reoccured for the last two nights: maybe the spleen is shrinking?
Consider this: a few weeks ago, I wasn't sure that I would be able to go to the Columbia Shakespeare Seminar meeting this coming Friday, but now I am confidant that I can be there, do the introductions of the speakers, and have a good time seeing friends and colleagues. I feel alert and happy.
This morning, I am going to mail the essay I have been working on, and then I am going to try to forget it until I get the word from the journal: accepted; accepted with changes; not accepted. The good thing is that even if it's not accepted, the readers will probably provide some comments that will help me in my next revision. It's so great to get this project out of the way, at least temporarily. It was one of the three jobs I wanted to get done before—you know what. Two out of three are now out of the way.
But of course, I am adding new jobs: I am writing a seminar paper on Measure for Measure for the annual Shakespeare Meeting in the spring. I didn't think that I would be able to attend that when I committed to the paper, but now I am actually thinking that I will be able to be there. How happy I was to attend it last spring, even though I lasted only one day. How great it would be to attend again, especially to see my New Variorum team mates.
And Laury Magnus and I are co-editing Measure for Measure for Focus—my 3rd play for them, and I think Laury's 5th or 6th.
All this is good. What's bad? Well temporarily, I hope, the arthritis in both my thumbs is holding me back. Thanks goodness I never learned to type, so I am still in four-finger mode, never using the thumbs. I am having some dizziness, which is listed as one of the side effects of T&P. So I am a little unsteady on my feet. I appreciate Merwin's arm when we are together, and when we are not I am very cautious about where I step.
I am looking forward to some good things: at last we are taking advantage of Optonline's free Tues. movies and will attend one this afternoon. Tomorrow, Joe D will visit here, and I am looking forward to making lunch for him, Merwin and me. But more about that when it comes.
In the meantime, thanks all for listening; it helps me to know you're there.
Love to all,
Bernice
Sunday, November 8, 2009
Two eventful days
Hello all!
Yesterday, Sat., was a good day. Read a lot all day for the essay I am still working on, met with Laury here for some work on her interview, then made a light supper, spinach pancakes, a favorite since babyhood. In those old days doctors thought children should have lots of spinach for iron, but since I wouldn't eat spinach, the doc gave my mother a recipe that he said was a foolproof way to get spinach into a child.
This is the recipe: a bag of washed baby spinach, about 6 oz I think, but I didn't look. Wash again and spin dry. Place in large bowl and beat in eggs one at a time until every leaf is well coated and glistening. I used 3 eggs. You can use eggbeaters for all or some of the eggs. Heat large frying pan. Add oil and heat. Arrange 3 or 4 spoonfuls of the spinach mix in the hot oil in small cakes. I do this now with a twist. Turn the patties when quite brown on one side. On the brown side arrange a little cheese of any kind. When the bottom layer is brown and crisp, remove from pan with slotted spoon, and drain on a plate covered with a paper towel. This made enough pancakes for supper that night (with salad and bread) and enough for lunch the next day with sliced tomatoes and potato salad. The patties can be reheated or simply warmed to room temp. Yum. No salt added. Dotty, do you remember my mother making these?
After supper we tried a movie: We get Netflix, and as Merwin says, we are the customers they love best. One can order as many films as one wants a month: once you return one you can get the next one on your list. Well, we see about one every 6 weeks or so because we are so slow to view them. This one was "Waltz with Bashir," and we could not take it. It was well done, but it was raw and painful. I give the Israeli filmmaker credit for exposing the truth about the violence in Lebanon, but I don't like seeing it, even softened, I suppose, by the animation. So we stopped after about a half hour.
I wasn't going to write about SPIN, but this morning I went to try out the scheme of sitting through the whole class. I can tell you that is pretty hard to do. Fortunately Gail had great music that kept me moving, and I adjusted my hands now and then (behind, in front, at my sides--anything to get some variety). My behind was sore!
After that I worked for several hours putting the reading I had done yesterday to work in the essay I am writing. Then to a wonderful concert at Tilles Center, about 4 miles from us, where we heard a cello-piano concert. It was lovely. I was tired but did not fall asleep because the performance was so engaging.
After that a brief nap and then Dawn came to have dinner with us at Sherwood's, one of my favorite local restaurants. We were celebrating her birthday, belatedly, and her new first full-time job as a college teacher of English. She is happy!
A strange thing has been happening to me. I noticed on Friday night that my feet and lower leg were very swollen, starting at about 7 p.m. I lay down with my feet up. In the morning the swelling seemed about gone. Then the next evening the same thing happened and this time it was still somewhat swollen in the A.M. I had to hunt for shoes that were big enough to hold these big feet. My son, who is a doctor (infertility specialist) told me what it was: it's another effect of this spleen of mine, which is impinging on the Inferior vena cava, preventing it from doing what it's supposed to do. He said "It's the largest vein in the body. It runs parallel to your aorta. It returns all blood to your heart." He said that I should lie down on my left side as much as possible. That's what I am going to do right now.
Again my temp. is normal, and I feel really good.I appreciate all your loving care, It helps me a lot to know you are out there listening to me.
Love to all,
Bernice/Mom
Yesterday, Sat., was a good day. Read a lot all day for the essay I am still working on, met with Laury here for some work on her interview, then made a light supper, spinach pancakes, a favorite since babyhood. In those old days doctors thought children should have lots of spinach for iron, but since I wouldn't eat spinach, the doc gave my mother a recipe that he said was a foolproof way to get spinach into a child.
This is the recipe: a bag of washed baby spinach, about 6 oz I think, but I didn't look. Wash again and spin dry. Place in large bowl and beat in eggs one at a time until every leaf is well coated and glistening. I used 3 eggs. You can use eggbeaters for all or some of the eggs. Heat large frying pan. Add oil and heat. Arrange 3 or 4 spoonfuls of the spinach mix in the hot oil in small cakes. I do this now with a twist. Turn the patties when quite brown on one side. On the brown side arrange a little cheese of any kind. When the bottom layer is brown and crisp, remove from pan with slotted spoon, and drain on a plate covered with a paper towel. This made enough pancakes for supper that night (with salad and bread) and enough for lunch the next day with sliced tomatoes and potato salad. The patties can be reheated or simply warmed to room temp. Yum. No salt added. Dotty, do you remember my mother making these?
After supper we tried a movie: We get Netflix, and as Merwin says, we are the customers they love best. One can order as many films as one wants a month: once you return one you can get the next one on your list. Well, we see about one every 6 weeks or so because we are so slow to view them. This one was "Waltz with Bashir," and we could not take it. It was well done, but it was raw and painful. I give the Israeli filmmaker credit for exposing the truth about the violence in Lebanon, but I don't like seeing it, even softened, I suppose, by the animation. So we stopped after about a half hour.
I wasn't going to write about SPIN, but this morning I went to try out the scheme of sitting through the whole class. I can tell you that is pretty hard to do. Fortunately Gail had great music that kept me moving, and I adjusted my hands now and then (behind, in front, at my sides--anything to get some variety). My behind was sore!
After that I worked for several hours putting the reading I had done yesterday to work in the essay I am writing. Then to a wonderful concert at Tilles Center, about 4 miles from us, where we heard a cello-piano concert. It was lovely. I was tired but did not fall asleep because the performance was so engaging.
After that a brief nap and then Dawn came to have dinner with us at Sherwood's, one of my favorite local restaurants. We were celebrating her birthday, belatedly, and her new first full-time job as a college teacher of English. She is happy!
A strange thing has been happening to me. I noticed on Friday night that my feet and lower leg were very swollen, starting at about 7 p.m. I lay down with my feet up. In the morning the swelling seemed about gone. Then the next evening the same thing happened and this time it was still somewhat swollen in the A.M. I had to hunt for shoes that were big enough to hold these big feet. My son, who is a doctor (infertility specialist) told me what it was: it's another effect of this spleen of mine, which is impinging on the Inferior vena cava, preventing it from doing what it's supposed to do. He said "It's the largest vein in the body. It runs parallel to your aorta. It returns all blood to your heart." He said that I should lie down on my left side as much as possible. That's what I am going to do right now.
Again my temp. is normal, and I feel really good.I appreciate all your loving care, It helps me a lot to know you are out there listening to me.
Love to all,
Bernice/Mom
Friday, November 6, 2009
Almost nine and still awake!
Dear Friends and family,
Busy day today: a lovely lunch with friends from RSNS (our synagogue). I left just in time; another 10 minutes and I would have been extremely tired. As it was, I went right to bed for a couple of hours afterward.
Then I had a pretty good work day, progress on 3 projects. And finally at 6:45 I went to the PT for evaluation and therapy for the painful thumbs. Part of the reason for the pain is--SPIN. As soon as the PT heard that I had been to SPIN that morning, she said absolutely not to SPIN. She's had at least 100 patients who have ruined their hands with SPIN. This reminds me of the time I had to give up running, which is how I got into SPIN in the first place. Finally she agreed that if I sat through the whole class and did not do more than rest my hands on the handlebars, I could try it. She demonstrated to me that even just using the 4 fingers and not the thumbs, as I have been doing, when standing on the bike, is not enough because the thumb is engaged in any case. So I will go and sit.
The other development is the spleen: now it seems bigger to me. It's uncomfortable as it has not been before. At the conference the other day, one of the doctors showed a slide of a man with an enlarged spleen, from rib to groin. The normal spleen is virtually invisible. Then he showed the x-ray veiw, and you could see the spleen extend all the way down the body right next to the liver, which was also enlarged. Then he showed the pictures after the therapy this man received. The spleen and liver shrank to more normal size. That's what we are hoping for, but today it seems I look on the outside just like the man on the slide.
OK, what to do? Nothing, I guess. Take my meds, hope for a change, and try something else if this doesn't work. Dr. Raza at St. Vincent's Comprehensive Cancer Center had suggested three therapies to try, so if T&P fail, I will hope for better results with something else.
I have no complaints, though. So many minutes of my day are enjoyable, and I can forget the whole body business for hours at a time.
Hoping you are all well. I am happy to hear from you by email if you would like to respond to my blog or just chat: I still can't talk on the phone very well, though face-to-face seems to work all right.
My address is bkliman@optonline.net, and if you want to include Merwin, his is mkliman@optonline.net.
Love to all,
Bernice
Busy day today: a lovely lunch with friends from RSNS (our synagogue). I left just in time; another 10 minutes and I would have been extremely tired. As it was, I went right to bed for a couple of hours afterward.
Then I had a pretty good work day, progress on 3 projects. And finally at 6:45 I went to the PT for evaluation and therapy for the painful thumbs. Part of the reason for the pain is--SPIN. As soon as the PT heard that I had been to SPIN that morning, she said absolutely not to SPIN. She's had at least 100 patients who have ruined their hands with SPIN. This reminds me of the time I had to give up running, which is how I got into SPIN in the first place. Finally she agreed that if I sat through the whole class and did not do more than rest my hands on the handlebars, I could try it. She demonstrated to me that even just using the 4 fingers and not the thumbs, as I have been doing, when standing on the bike, is not enough because the thumb is engaged in any case. So I will go and sit.
The other development is the spleen: now it seems bigger to me. It's uncomfortable as it has not been before. At the conference the other day, one of the doctors showed a slide of a man with an enlarged spleen, from rib to groin. The normal spleen is virtually invisible. Then he showed the x-ray veiw, and you could see the spleen extend all the way down the body right next to the liver, which was also enlarged. Then he showed the pictures after the therapy this man received. The spleen and liver shrank to more normal size. That's what we are hoping for, but today it seems I look on the outside just like the man on the slide.
OK, what to do? Nothing, I guess. Take my meds, hope for a change, and try something else if this doesn't work. Dr. Raza at St. Vincent's Comprehensive Cancer Center had suggested three therapies to try, so if T&P fail, I will hope for better results with something else.
I have no complaints, though. So many minutes of my day are enjoyable, and I can forget the whole body business for hours at a time.
Hoping you are all well. I am happy to hear from you by email if you would like to respond to my blog or just chat: I still can't talk on the phone very well, though face-to-face seems to work all right.
My address is bkliman@optonline.net, and if you want to include Merwin, his is mkliman@optonline.net.
Love to all,
Bernice
Thursday, November 5, 2009
Ups and downs
Dear Friends and Family,
I have not written since Monday because we have been so busy.I won't fill in every detail but just the salient ones (more for myself than anyone else, so skip at will). In NYC, where we went Tues. night, I cannot add to the blog: haven't figured out how.
SPIN on Tues. at 6:30 a.m. was good; I pace myself shamelessly. The room is dark, each person is in his or her own world, and I just work as well as I can. I won't talk about my gym classes anymore unless something special happens because I plan to be at a class every day I am not in NYC. But at the MPD conference on Wed. I learned that weight loss in MPD is from loss of muscle, so I want to work to counteract that as much as possible. In NYC it's all the subway stairs that I depend on for exercise. Judging by my breathlessness, I think they give me a little workout.
We went to two doctors on Tues: the hand orthopedist, a real sweetheart, who pointed out the loss of muscle in my thumb. That's part of the reason I can't work it well; the pain is from arthritis. He didn't think it was tendinitis, and recommended that I not get the steroid shots that I wanted, though he was willing to do it. He wants me to see the PT he says is the very best person who works on hands--a miracle worker. And her office is on Glen Cove Ave. about a mile from my house.So I'll phone her tomorrow and see what she can do. I can make an injection appointment anytime, said the doctor. Anyway, that whole deal, with waiting, took a couple of hours, and we then had to rush over to the hem's office to talk things over with Dr. K. And wait a hour more. She and I both think the spleen may be a little smaller. But it turned out that my WBC had gone up to 161. She is not too concerned yet; wait and see; come in in two weeks for another test. If T&P do not work by the 12th week, it's no good and I have to stop.
After that we rushed into the City to be there to sleep so we could be there for the start of of MPD conference the next morning at 8 a.m. for breakfast (at the posh Athletic Club). After the train ride to NYC quite late, we decided to eat out at a new place, SalmonRiver, one of the restaurants closest to our building, which we have never tried before. A very nice dining room, quiet and reasonably well lit. It's in a hotel, so it was full of traveling types, both men and women, but mainly the former. I had a lovely Merlot, Nathanson's.
The conference the next day was amazingly educational, and it was good meeting so many others in this same boat, some of whom I had written to before through the MPD list. There were dosctors and researchers from all over the world, abot 7 of whom spoke to us about his (always his) recent research. I won't put here everything we learned, but the fact that sticks with me is that people in what I call the "end game" have about 1-2 years to live. I was rather pleased with that because a few months ago I felt so bad that I thought it might be months, not years. The signs are night sweats, enlarged spleen, weight loss, itching, fatigue, and fevers. The point is that I don't know for sure that this disease will be the end: I could get run over by a NYC bicyclist. These hard-working doctors and researchers could find a cure: they feel closer to one than ever, maybe two to four years away, maybe a breakthrough will come sooner. The point for me is, always, to live one day at a time and keep a smile on my face.
The peskiest thing is still this Little cough that limits my ability to talk on the phone, in spite of the teapot, the nasal spray the gargling, et al. It's the spleen, says my hem.
Anyway, we left the conference early because I was beat, and took we napped to get ready for Barbara Kingsolver at the NYPL across the street at 7 p.m. I don't usually plan two strenuous activities on one day, but this promised to be about an hour, and afterward all I had to do was cross the street and get to bed. She was terrific; enjoyed her very much. She spoke eloquently about her work, responding gracefully to every question her interviewer posed. It was mainly about her new novel, Lacunae, but she did range over the whole field of the process of writing. We came early to get good seats, and I had a good time with the woman seated to my left. She is re-learning Yiddish, and I know a little, and we were having fun with songs, phrases, and whatever we could remember. I thought, I'd like to see this person again, but then what's the point? I regret now that I had a defeatist attitude about it.
Merwin went to GH because he had important things to do early on Thurs. a.m. I went right to bed in NYC and went to the library the next day. I had a lot of fun. I enjoy so much learning things I have never known. I was working on a book by Falconer, a naval officer with, obviously, a bent for naval history and for Shakespeare. He explained a number of terms in the play that had been opaque to me, like 'card' and 'calendar': I had not thought of them as a sailor's lingo. I could go on about this, but in about a week if you're interested, you can find all of Falconer's notes by searching (Search HW) on the website hamletworks.org. And I also disposed of another volume of TLS, which Jay, the librarian at the NYPL, who works with the people in the two study rooms there, so kindly places on my shelf for me.
That's a lot to write and to read: now for making supper for my dear husband. Turkey meat loaf, baby Yukon potatoes, a little salad.
Love to all,
Bernice/Mom
I have not written since Monday because we have been so busy.I won't fill in every detail but just the salient ones (more for myself than anyone else, so skip at will). In NYC, where we went Tues. night, I cannot add to the blog: haven't figured out how.
SPIN on Tues. at 6:30 a.m. was good; I pace myself shamelessly. The room is dark, each person is in his or her own world, and I just work as well as I can. I won't talk about my gym classes anymore unless something special happens because I plan to be at a class every day I am not in NYC. But at the MPD conference on Wed. I learned that weight loss in MPD is from loss of muscle, so I want to work to counteract that as much as possible. In NYC it's all the subway stairs that I depend on for exercise. Judging by my breathlessness, I think they give me a little workout.
We went to two doctors on Tues: the hand orthopedist, a real sweetheart, who pointed out the loss of muscle in my thumb. That's part of the reason I can't work it well; the pain is from arthritis. He didn't think it was tendinitis, and recommended that I not get the steroid shots that I wanted, though he was willing to do it. He wants me to see the PT he says is the very best person who works on hands--a miracle worker. And her office is on Glen Cove Ave. about a mile from my house.So I'll phone her tomorrow and see what she can do. I can make an injection appointment anytime, said the doctor. Anyway, that whole deal, with waiting, took a couple of hours, and we then had to rush over to the hem's office to talk things over with Dr. K. And wait a hour more. She and I both think the spleen may be a little smaller. But it turned out that my WBC had gone up to 161. She is not too concerned yet; wait and see; come in in two weeks for another test. If T&P do not work by the 12th week, it's no good and I have to stop.
After that we rushed into the City to be there to sleep so we could be there for the start of of MPD conference the next morning at 8 a.m. for breakfast (at the posh Athletic Club). After the train ride to NYC quite late, we decided to eat out at a new place, SalmonRiver, one of the restaurants closest to our building, which we have never tried before. A very nice dining room, quiet and reasonably well lit. It's in a hotel, so it was full of traveling types, both men and women, but mainly the former. I had a lovely Merlot, Nathanson's.
The conference the next day was amazingly educational, and it was good meeting so many others in this same boat, some of whom I had written to before through the MPD list. There were dosctors and researchers from all over the world, abot 7 of whom spoke to us about his (always his) recent research. I won't put here everything we learned, but the fact that sticks with me is that people in what I call the "end game" have about 1-2 years to live. I was rather pleased with that because a few months ago I felt so bad that I thought it might be months, not years. The signs are night sweats, enlarged spleen, weight loss, itching, fatigue, and fevers. The point is that I don't know for sure that this disease will be the end: I could get run over by a NYC bicyclist. These hard-working doctors and researchers could find a cure: they feel closer to one than ever, maybe two to four years away, maybe a breakthrough will come sooner. The point for me is, always, to live one day at a time and keep a smile on my face.
The peskiest thing is still this Little cough that limits my ability to talk on the phone, in spite of the teapot, the nasal spray the gargling, et al. It's the spleen, says my hem.
Anyway, we left the conference early because I was beat, and took we napped to get ready for Barbara Kingsolver at the NYPL across the street at 7 p.m. I don't usually plan two strenuous activities on one day, but this promised to be about an hour, and afterward all I had to do was cross the street and get to bed. She was terrific; enjoyed her very much. She spoke eloquently about her work, responding gracefully to every question her interviewer posed. It was mainly about her new novel, Lacunae, but she did range over the whole field of the process of writing. We came early to get good seats, and I had a good time with the woman seated to my left. She is re-learning Yiddish, and I know a little, and we were having fun with songs, phrases, and whatever we could remember. I thought, I'd like to see this person again, but then what's the point? I regret now that I had a defeatist attitude about it.
Merwin went to GH because he had important things to do early on Thurs. a.m. I went right to bed in NYC and went to the library the next day. I had a lot of fun. I enjoy so much learning things I have never known. I was working on a book by Falconer, a naval officer with, obviously, a bent for naval history and for Shakespeare. He explained a number of terms in the play that had been opaque to me, like 'card' and 'calendar': I had not thought of them as a sailor's lingo. I could go on about this, but in about a week if you're interested, you can find all of Falconer's notes by searching (Search HW) on the website hamletworks.org. And I also disposed of another volume of TLS, which Jay, the librarian at the NYPL, who works with the people in the two study rooms there, so kindly places on my shelf for me.
That's a lot to write and to read: now for making supper for my dear husband. Turkey meat loaf, baby Yukon potatoes, a little salad.
Love to all,
Bernice/Mom
Monday, November 2, 2009
Another good day so far
Dear Friends and Family,
First thing this morning came good news about our friend Dave's continued recovery from the concussion he sustained in an encounter between his bike and a dog. He can now speak a few words, even big ones! They hope he'll come home in a few days, but he'll need a lot of home care.
I had had a pretty awful night because of leg cramps. I could only get rid of them by walking, and I was so tired: I wanted to sleep. But by the time I got up for good, I put that behind me. If anyone has any ideas about curing leg cramps, I would appreciate hearing about it. Dave says to point my toes either up or down. I'll try that next time.
I enjoyed Mimi's class today, though it was a bit of a struggle. I stayed the whole time and did just about everything. Hooray! It's fun seeing my friends Elaine, Louise, Florence, Murray, Sid, et al.
Yesterday, Laury, Merwin and I had a good time reading her interview with me as if it were a play. I think it's going to be really good. This is about hamletworks.org, our team's website. And today, with that out of the way, and with some new ideas about my essay from my friend Joe P., I started in on that again. It's amazing how this happens: put something you write aside for a couple of days or even weeks, and you begin to see where it falls short and what you can do about it. It's getting better.
No big cooking today, just an apple compote, to which I added a little pear and a little peach. This was for Florence. No doubt she'll have to add sugar! I realized that I didn't say what to do with the cheese pancake batter. You heat a frying pan, add oil and heat it, put the batter in the pan in small spoonfuls. When they brown on the edge, turn them over carefully. I keep turning until they are uniformly brown. For Merwin's batch I added a little butter to the pan: I don't generally use butter myself.
My friend from old days, Dotty M., sent me the sweetest recollection of my parents, and I will close with that:
“I wanted to make tofu pie today and was thinking of you as I thumbed through some old recipes that I had written as I watched your mom do her thing. Making all those good things to eat. The Blintzes, krepla, kanishes. She would call me over to watch the way she did it. I loved the way she measured the water in the eggshell...I can see her now. What a wonderful person she was, so caring so thoughtful. I have many nice memories of when you lived in the back. I think of your dad too...he was such a sweetheart. A wonderful family Bunny."
I was "Bunny" till I was 30, so you can tell how long I've known Dotty!
More tomorrow: we go to the hem and will find out if anything has changed in the few days I've been on T&P; also at last I see the hand orthopedist who I hope can cure my two thumbs' tendinitis.
love to all,
Bernice
First thing this morning came good news about our friend Dave's continued recovery from the concussion he sustained in an encounter between his bike and a dog. He can now speak a few words, even big ones! They hope he'll come home in a few days, but he'll need a lot of home care.
I had had a pretty awful night because of leg cramps. I could only get rid of them by walking, and I was so tired: I wanted to sleep. But by the time I got up for good, I put that behind me. If anyone has any ideas about curing leg cramps, I would appreciate hearing about it. Dave says to point my toes either up or down. I'll try that next time.
I enjoyed Mimi's class today, though it was a bit of a struggle. I stayed the whole time and did just about everything. Hooray! It's fun seeing my friends Elaine, Louise, Florence, Murray, Sid, et al.
Yesterday, Laury, Merwin and I had a good time reading her interview with me as if it were a play. I think it's going to be really good. This is about hamletworks.org, our team's website. And today, with that out of the way, and with some new ideas about my essay from my friend Joe P., I started in on that again. It's amazing how this happens: put something you write aside for a couple of days or even weeks, and you begin to see where it falls short and what you can do about it. It's getting better.
No big cooking today, just an apple compote, to which I added a little pear and a little peach. This was for Florence. No doubt she'll have to add sugar! I realized that I didn't say what to do with the cheese pancake batter. You heat a frying pan, add oil and heat it, put the batter in the pan in small spoonfuls. When they brown on the edge, turn them over carefully. I keep turning until they are uniformly brown. For Merwin's batch I added a little butter to the pan: I don't generally use butter myself.
My friend from old days, Dotty M., sent me the sweetest recollection of my parents, and I will close with that:
“I wanted to make tofu pie today and was thinking of you as I thumbed through some old recipes that I had written as I watched your mom do her thing. Making all those good things to eat. The Blintzes, krepla, kanishes. She would call me over to watch the way she did it. I loved the way she measured the water in the eggshell...I can see her now. What a wonderful person she was, so caring so thoughtful. I have many nice memories of when you lived in the back. I think of your dad too...he was such a sweetheart. A wonderful family Bunny."
I was "Bunny" till I was 30, so you can tell how long I've known Dotty!
More tomorrow: we go to the hem and will find out if anything has changed in the few days I've been on T&P; also at last I see the hand orthopedist who I hope can cure my two thumbs' tendinitis.
love to all,
Bernice
Sunday, November 1, 2009
Every day an adventure
Dear Friends and family,
I missed a day yesterday. So I'll catch up a little from Friday to today, Sunday 1 Nov. at almost 11:a.m.
I went to SPIN again this morning. This was Alex's class, and a bit more demanding than Trigg's last Tues. But I took it easy enough. That's the great thing about SPIN; you control the tension on the wheel and work as hard as you want or can. Alex made me work harder because of his constant urging of the class, the many moves he had us make, and the energetic level of his music. But I felt really high afterward.
I came home and made cheese pancakes, using the delicious ricotta I had purchased the other day. Merwin likes a mid-morning snack with hot chocolate, so I invited him to share this feast with me. Years ago when Lincoln—now almost 49!—was a little boy I made him a cookbook, illustrated so he could see what to do. Cheese pancakes was one of the specialities that he could make. It's a recipe of my mother's: in a small bowl put about 2 heaping tablespoons of cottage cheese (the ricotta works well too), and an equal amount of matzoh meal, or you can use regular white flour, and one or two eggs (I used egg-beaters this morning). I also add a little pinch of baking powder, just enough to make the pancakes puff up nicely. Add lemon juice to taste to the batter (Merwin squeezed about half of a large lemon for me: I can't squeeze because of the tendinitis in my thumbs). I don't use salt: the cheese and lemon juice take care of that. If you have time, grated lemon rind is a nice addition too. I skipped that this morning. Yummy!
I had six changes last night, soaking wet each time. The wash will have to be done this morning. Maybe that's why the scale showed another drop in my weight. It's not catastrophic, just a 1/4 lb or 1/2 lb here and there. I ate as much as I possibly could yesterday: you'd be amazed at how much I can put away! I was so full. This is such an interesting twist in my life, because I have always struggled with my weight. I am a graduate of Overeaters' Anonymous, and several other weight-control programs. I am a success story in that area, but not without constant vigilance—that is, up to now. Now I can eat as much as I want and in fact feel I have to eat more than I want.
When I woke up this morning, I actually felt a little change, I think, in my spleen size, a little tiny space between it and my ribs, which hadn't been there a few days ago. So maybe the T&P are working! Wouldn't that be nice? Yesterday also was the first day in weeks that I had an exactly normal temp, 98.6. I consider anything under 100 to be normal, but real normal is even better.
And maybe you can tell that I am full of energy at this moment.
Another good thing was starting on a salt solution to clear out my nose passages. This is supposed to help with the drip that causes the coughing when I speak, exacerbated by the spleen's pressure on my lungs. I have a little tea-pot thing that I fill with warm water containing a packet-full of salt solutions. I tip my head one way (I'm a little teapot, Mimi) and pour, and then the other and pour again. It's quick and easy and it seems to be working. If only I could talk on the phone again I would not feel so isolated from my friends. Yes. email is great, and Merwin can relay messages, but to actually be able to talk would be heaven. But there is nothing like a good chat on the phone. Almost as good as a face to face.
Halloween went very smoothly. Lots of lovely children came by, and there is plenty of candy left for Merwin's store of goodies. It'll probably last him a year because he indulges himself very lightly. I don't eat anything with manufactured sugar. I did make myself an apple compote last night, and topped it off with a spoon of the ricotta instead of the usual yogurt.
More tomorrow!
Love to all,
Bernice
I missed a day yesterday. So I'll catch up a little from Friday to today, Sunday 1 Nov. at almost 11:a.m.
I went to SPIN again this morning. This was Alex's class, and a bit more demanding than Trigg's last Tues. But I took it easy enough. That's the great thing about SPIN; you control the tension on the wheel and work as hard as you want or can. Alex made me work harder because of his constant urging of the class, the many moves he had us make, and the energetic level of his music. But I felt really high afterward.
I came home and made cheese pancakes, using the delicious ricotta I had purchased the other day. Merwin likes a mid-morning snack with hot chocolate, so I invited him to share this feast with me. Years ago when Lincoln—now almost 49!—was a little boy I made him a cookbook, illustrated so he could see what to do. Cheese pancakes was one of the specialities that he could make. It's a recipe of my mother's: in a small bowl put about 2 heaping tablespoons of cottage cheese (the ricotta works well too), and an equal amount of matzoh meal, or you can use regular white flour, and one or two eggs (I used egg-beaters this morning). I also add a little pinch of baking powder, just enough to make the pancakes puff up nicely. Add lemon juice to taste to the batter (Merwin squeezed about half of a large lemon for me: I can't squeeze because of the tendinitis in my thumbs). I don't use salt: the cheese and lemon juice take care of that. If you have time, grated lemon rind is a nice addition too. I skipped that this morning. Yummy!
I had six changes last night, soaking wet each time. The wash will have to be done this morning. Maybe that's why the scale showed another drop in my weight. It's not catastrophic, just a 1/4 lb or 1/2 lb here and there. I ate as much as I possibly could yesterday: you'd be amazed at how much I can put away! I was so full. This is such an interesting twist in my life, because I have always struggled with my weight. I am a graduate of Overeaters' Anonymous, and several other weight-control programs. I am a success story in that area, but not without constant vigilance—that is, up to now. Now I can eat as much as I want and in fact feel I have to eat more than I want.
When I woke up this morning, I actually felt a little change, I think, in my spleen size, a little tiny space between it and my ribs, which hadn't been there a few days ago. So maybe the T&P are working! Wouldn't that be nice? Yesterday also was the first day in weeks that I had an exactly normal temp, 98.6. I consider anything under 100 to be normal, but real normal is even better.
And maybe you can tell that I am full of energy at this moment.
Another good thing was starting on a salt solution to clear out my nose passages. This is supposed to help with the drip that causes the coughing when I speak, exacerbated by the spleen's pressure on my lungs. I have a little tea-pot thing that I fill with warm water containing a packet-full of salt solutions. I tip my head one way (I'm a little teapot, Mimi) and pour, and then the other and pour again. It's quick and easy and it seems to be working. If only I could talk on the phone again I would not feel so isolated from my friends. Yes. email is great, and Merwin can relay messages, but to actually be able to talk would be heaven. But there is nothing like a good chat on the phone. Almost as good as a face to face.
Halloween went very smoothly. Lots of lovely children came by, and there is plenty of candy left for Merwin's store of goodies. It'll probably last him a year because he indulges himself very lightly. I don't eat anything with manufactured sugar. I did make myself an apple compote last night, and topped it off with a spoon of the ricotta instead of the usual yogurt.
More tomorrow!
Love to all,
Bernice
Subscribe to:
Posts (Atom)