Sometimes it’s good to watch a little network television

These days, if you have some time to relax and want to watch a little television, odds are that you will find, to quote the old Bruce Springsteen song, that there are more than “fifty-seven channels and nothing on.” 

So Barry has set up our DVR to record a number of programs so that we have things to watch when we have time. One of those programs is “CBS Sunday Morning.” A little earlier this evening we took a break and watched some of it.

Amid a number of interesting pieces was one called “B. Smith’s Alzheimer’s Battle.” We were not familiar with this quite accomplished woman who, with the support of her husband and undoubtedly a network of friends and family, is doing her best to keep her life going as well as she can for as long as she can. But when the piece really piqued our interest is when they introduced her neuropsychologist at Mount Sinai, Dr. Martin Goldstein, a name that should be familiar to my regular readers. He is the doctor who ordered my first MRI and broke the news to us late that horrible night in his small office, then put me in a wheelchair himself and pushed me to the inpatient neurology floor for admission. He helped us to reach a decision to pursue primary treatment for the CNS lymphoma at MSKCC, and he is the doctor who later referred me to Heidi and has continued to follow me during recovery. He is also the doctor with whom I need to make an appointment for follow-up, although I suspect that will be increasingly difficult to do after having seen this nationally televised report.

Barry and I will be forever grateful for all Dr. Goldstein has done for us. I only hope that my future follow-up visits will continued to be filled with good news.

Love,

Rebecca

Continuing on the theme of summer music

Last summer at this time I attached and quoted from the James Taylor song, “That’s Why I’m Here.” But for those of you who have forgotten, or those who never saw that post, I was reminded of this a few minutes ago when Dina sent along this very sweet picture taken today at Lake Massapoag in Sharon, just a mile or so from their house. 

This summer the line “Got your baby, got your blanket, got your bucket of beer” takes on new meaning!

I received a lovely message from our friend, jazz pianist Leslie Pintchik of the eponymous trio, that she will be performing in Cambridge, MA later this summer. Unfortunately we will likely have to be in New York on Wednesday August 27^th. But I am passing this along for readers in the Boston area who might be able to make it:

Leslie Pintchik Trio

Scullers Jazz Club at the Doubletree Suites by Hilton Hotel Boston

400 Soldiers Field Road

Boston, MA 02134

Tel: 617-562-4111

Email: Info@ScullersJazz.com

Website: www.ScullersJazz.com

Here’s a video of the trio. If you do go, please go up to her during a break and tell her I sent you!

Love,

Rebecca

Back to the garden

It was simply a glorious weekend! After a week of rain, the sun finally emerged on Saturday morning and continues as I write this on Monday afternoon. We had arranged a fellow to do some various jobs around the house including washing the windows, so it was no surprise when he arrived this morning ready to start with those.

Barry had to be at Mount Sinai on Friday so we spent another Sabbath in Riverdale. Sunday evening was the annual synagogue dinner, but we had the day free, so we headed back to the New York Botanical Garden where they had a fantastic Father’s Day celebration. My thoughts about “heading back to the garden” brought to mind the Crosby Stills and Nash song, but in fact “Woodstock” (the song) was written by Joni Mitchell, who performed and recorded it as well.  

Although the local news reports of the event emphasized the food, which included many vendors with large barbeque grills, there was actually so much more going on, including live music. We brought along a picnic and sat out on the grass and listened to the music, a sort of combination of folk and country.

Roosevelt Dime

To listen to the music of Roosevelt Dime is to take a journey through American roots music. Inspired by Appalachian string bands, Memphis soul, New Orleans dixieland, and the musical melting pot of Brooklyn which they call home, the band has forged an original sound all their own. After years of thrilling audiences at festivals and venues across the country, the band has fully captured the energy and musicianship of their live performances on their new albumFull Head of Steam. The band's seamless mixture of musical genres has been described as "a perpetual crowd-pleaser" by The New York Times.

Cricket Tell the Weather

Based in the New York-Connecticut area, Cricket Tell the Weather is an indie string band featuring bluegrass-inspired original music. Winners of the 2013 FreshGrass Award, Cricket is rooted in the bluegrass tradition, and expands to include rock, pop, and chamber ensemble elements. Award-winning songwriters Andrea Asprelli (fiddle) and Jason Borisoff (guitar) received a blue ribbon in 2011 at the Podunk Bluegrass Festival Songwriting Competition for their co-written song "Remington". They are joined by NYC native Doug Goldstein on the banjo and Jeff Picker on bass from Portland, OR. The band has twice been awarded the Neighborhood Arts & Heritage Grant from the City of Bridgeport, and is actively involved in providing bluegrass workshops to to students of all ages under their "American Roots Revival" workshop series.

Miss Tess and the Talk Backs

Miss Tess & The Talkbacks make grooving modern music with a vintage feel that nods to the traditions of jazz, swing, rockabilly, and more while maintaining a unique and personal sound. The bands most recent release, The Love I Have For You, is their second on rootsy label Signature Sounds and pays homage to some of Tess's favorite singers and songwriters including Willie Nelson, Bonnie Raitt, Neil Young, Ted Hawkins, Randy Newman, and Hank Williams through a set of rousing covers.

With the perfect weather and lovely surroundings, we had a hard time tearing ourselves away. But we had to leave just before the music ended to have time to get home and shower and dress to head over to the annual dinner at our synagogue. We have not gone to this event for a number of years; neither of us is crazy about these dinners. But this year we had two good reasons to go: we are friends with the main couple who was honored, and we have a number of friends who sing with the choir, which was performing. As an added bonus, it was a second chance to wear the outfit I bought and wore to a wedding in Sharon last summer. At this rate of use (≤ 1 per year) I will probably have this outfit for the rest of my life! These annual events used to be sit-down dinners, but a few years ago they decided to do the entire dinner as a buffet. There is always a large selection of things to eat at stations throughout the hall. But usually at these events there are fewer seats than there are guests, and neither of us enjoys eating while standing, let alone that I tire too quickly and that I am carrying an oxygen cylinder. So we arrived fashionably late. The program of speeches and musical performances was held in the main sanctuary of the synagogue. Some annual dinners are very serious, but what is likeable about this one is that it is not: the various honorees all had light-hearted and funny things to say. As celebratory as the dinner was, time was taken to turn our thoughts and prayers to the three young Israelis who were kidnapped last Thursday night and remain missing.

I close with hopes for their speedy and safe return.

Love,

Rebecca

How far are we willing to go?

The guest on “The Colbert Report” on Wednesday night was a software engineer named Rob Rhinehart, creator of Soylent, a new food substitute intended to supply all of our daily nutritional needs while avoiding many of the downsides of our usual diet. To be honest and to put it mildly, it looked pretty disgusting, even after Stephen added the Hershey’s Syrup! And it raises what in my mind is a deep and fundamental question: how much are we willing to deprive ourselves in exchange for the possibility of an increased lifespan? As Carrie Bradshaw of “Sex and the City” would put it, “will we really live longer, or will it just feel that way?”

Rob Rhinehart - Rob Rhinehart - The Colbert Report - Video Clip | Comedy Central

I have thought about this quite a bit lately, not because of the illness that brought me to blogging, but because of my (seemingly completely independent) pulmonary condition. Recently, my pulmonologist hired a nurse practitioner to assist with her practice. The upside of this from the patient perspective is that it helps to fill in the gaps for a physician who is carrying an enormous load, enabling more attention to be given to patients. But this attention may also be the downside of such additional personnel. After many relatively quiet years of routine visits to my pulmonologist, and without experiencing any meaningful clinical change in my condition, I am finding myself being advised to undergo many additional tests with discussions of all sorts of additional treatments. The current discussion is the possible addition of something called continuous positive airway pressure, or CPAP. I am not sure I can tolerate having that mask over my mouth and nose, since I find anything covering my face extremely stressful. CPAP would require yet another piece of equipment, let alone a noisy one, that has to sit near the bedside. That may sound like a minor inconvenience, but for someone trying to continue with a moderately active life in two locations, there is nothing minor about it at all. I cannot help but wonder whether there is a limit to which I would go to possibly – remember, there are no guarantees – extend my life by some small amount.

Perhaps I am a bit too prone to morbid thinking, but I, as undoubtedly most cancer patients in remission, think about what happens if the cancer returns. I am not sure I could get through this again either physically or emotionally. More importantly, I am not sure I want to put my husband and daughters through this again. I know they will all pooh-pooh this, but there may be a point beyond which I would no longer feel that the meager ends justify the heroic means.

How did I get to this after watching a funny bit about nutritional supplements? Does it have anything to do with the fact that it is Friday the 13^th?

Have a nice weekend!

Love,

Rebecca

Always a thrilling experience

The new patio chairs arrived as scheduled yesterday, and they are a fairly good match for our table. I spent over two hours undoing the packaging and bundling it up for recycling, including a long rest in the middle; it is frustrating to still tire so easily.  All the while, I was thinking that this is the downside to on-line shopping. Large items purchased in local stores usually include delivery and set-up, and often they will cart away the old items you have replaced. But when you deal with on-line orders you are pretty much on your own. The time you would have spent schlepping around to stores is spent taking care of the things that must be done at home when the new merchandise arrives. There is, as they say, no such thing as a free lunch.

Last evening I went into the City and met Barry at Lincoln Center for the Performing Arts. We were a bit early and fortunately the rain had let up so we were able to join a crowd on the plaza where a jazz trio was performing. Lincoln Center is truly one of New York City’s gems. With Avery Fisher Hall, the Metropolitan Opera, and the Julliard School of Music forming a large plaza with a beautiful fountain, it takes my breath away (well, not literally) every time I am there. I am reminded of that old joke my father used to tell me: “How do you get to Carnegie Hall? Practice!” I never practiced enough to perform at Carnegie Hall or Lincoln Center, but I do enjoy sitting among those audiences.

Pianist Yefim Bronfman and he New York Philharmonic Orchestra performed Beethoven’s 1^st and 4^th piano concertos. The concert hall was full and the audience quite enthusiastic. I have attached a recording of the entire set of Beethoven piano concertos; the 4^th, which is our favorite, begins at 1:41:15 in the attached recording. The orchestra also performed the world premiere of a short piece by a young composer, Anthony Cheung, which had been commissioned by the New York Philharmonic. It was no simple matter for the orchestra to play this piece between the two Beethoven concertos: the piano had to be removed and the orchestra’s seating rearranged and then returned to the original position for the 4^th concerto. Like most contemporary classical music, this one left us scratching our heads.

Have a nice day despite the rain!

  

Love,

Rebecca

Still not quite myself

My pulmonary disease is believed by some to be a precursor to something called carcinoids, which are slow-growing neuroendocrine-type tumors (NETs) originating in the cells of the neuroendocrine system. Some years ago my pulmonologist, along with an expert in NETs, decided to start me on a medication that is ordinarily used to control symptoms in patients with carcinoids, Sandostatin (generic name octreotide). I wrote about this in June of 2013: 

Sandostatin is a bit tricky to mix, and must be delivered as an intramuscular injection, which taxes the talents of most of us mere mortals who lack medical training.

Sandostatin is not something you can just pick up at your local pharmacy. I have this set up through CVS Caremark, their specialty pharmacy. So every three months I arrange for the next shipment. The drug must be kept chilled, so it is sent for overnight delivery in a little Styrofoam^® (just cannot get away from that Styrofoam^®) ice chest. I arrange the date for delivery when I call to order the refill so I know when it is coming, and I usually call Caremark on the morning of delivery to obtain the UPS tracking number so I can keep an eye on it.

I had arranged a few weeks ago to have my Sandostatin delivered today because I am due for the injection later this week. But to be honest, I completely forgot, even though it is in fact on my calendar.

Meanwhile, Barry had placed an order on-line for some chairs for our patio. We have a nice patio dinette set we bought years ago. The table looks pretty good but the chairs are in dire need of replacement; we have already disposed of two of them. He found a good substitute on Amazon and they are to be delivered tomorrow.

We wanted to delay that delivery date because we are going to a concert tomorrow evening and I did not want to risk a late delivery which would lead to four large boxes sitting outside our house. I went on the UPS website and found I needed to set up an account on the site in order to do that. So I dutifully set up an account, noted that it had one item, admittedly did not read it carefully, and, assuming it was the chairs, I changed the scheduled delivery to Friday.

I am not sure anymore what exactly made me realize I had gotten this dreadfully wrong, but at some point mid-morning I found out that what I had actually delayed was not the chairs but the Sandostatin. This could not be! For one thing, my injection is scheduled for Thursday, and for another, there is no way that little chest and blue ice will keep it cold for that many days. The word “panic” would be a gross understatement. “Hysteria” or perhaps “total meltdown” comes closer.

Barry was in his office at Mt. Sinai, planning to be in and out all day for various meetings. So I had to tackle this myself. To make a very long story short, after literally hours of stress and a lot of pleading during many phone calls, some of which were made on the verge of tears, I managed to circumvent the instructions to deliver on Friday. In fact, when this all happened, the Sandostatin was already in the truck* at the local distribution center in the Bronx, about 20-30 minutes from here, scheduled to be delivered today. Had I not called, it would have been returned to the center for Friday delivery. The package was delivered at about 6 pm; never have I been so thrilled to see that truck!

Two years ago, I could barely remember anything for more than a few seconds. Little by little I have improved, and things like cooking require fewer stops to read the same thing over and over again. Now I think the trouble is that, in my heart, I am the pre-brain-tumor Rebecca, but in reality, I am not and likely never will be. I have to keep reminding myself so I can avoid causing anyone, including myself, any more stress than life already has.

Love,

Rebecca

*I had to chuckle as I wrote this. I originally had written “on the truck,” and then I remembered the late George Carlin routine about airlines, so I went to YouTube and I found this. Warning: it is George Carlin, so the language is a bit raunchy, but it is also hilarious.

Shop until you drop

Barry likes to keep a supply of Styrofoam^® cups with lids to bring his tea with him in the car. He could and probably should, of course, use a travel mug, but that would require him to remember to bring that mug into the house and wash it, which he would almost assuredly never remember to do. His supply of the disposable cups was dwindling, so he went to Amazon to order some more. The cups and the lids were two separate items on Amazon. The lids arrived first. Oh, my, did they arrive – 1000 of them!

If Barry uses one per day, this will be a 2.7 year supply. But he does not drink that much tea on the run. He probably uses these cups twice a week, tops, or about 100 per year. So he now has a 10 year supply of lids for the Styrofoam^® cups.

A few hours later, another knock on the door, and 500 cups were delivered. Based on similar calculations, that’s a 5 year supply of Styrofoam^® cups.

It is just so easy to point and click that sometimes we forget to read. I did something not dissimilar recently and ended up with 1,875 Q-tips^®! Yes, I typed and you read that correctly, nearly two thousand Q-tips. I should probably add these to my will.

I have written previously (probably more than once) that, given my limited mobility and inability to drive, I have benefited tremendously by living in the age of Amazon. At the same time, on-line shopping is just so easy. And like many things that come too easily, it can be dangerous if we are not careful.

Love,

Rebecca