Perfect!

Dr. DeAngelis walked into the room and said “perfect!”

This was music to our ears.

Thanks to all of you who have sent along good vibes over the last few days.

Now I have to get busy packing for St. John!

Love,

Rebecca

Goodnight, dear Pete

We awoke this morning to the news that legendary folk singer Pete Seeger died at age 94. Although his voice had grown very weak in recent years, he continued to appear on stage until nearly the end.

Arlo Guthrie posted these moving words on Facebook a few hours ago:

I usually do a little meditation and prayer every night before I go to sleep - Just part of the routine. Last night, I decided to go visit Pete Seeger for a while, just to spend a little time together, it was around 9 PM. So I was sitting in my home in Florida, having a lovely chat with Pete, who was in a hospital in New York City. That's the great thing about thoughts and prayers- You can go or be anywhere. 

I simply wanted him to know that I loved him dearly, like a father in some ways, a mentor in others and just as a dear friend a lot of the time. I'd grown up that way - loving the Seegers - Pete & Toshi and all their family. 

I let him know I was having trouble writing his obituary (as I'd been asked) but it seemed just so silly and I couldn't think of anything that didn't sound trite or plain stupid. "They'll say something appropriate in the news," we agreed. We laughed, we talked, and I took my leave about 9:30 last night. 

"Arlo" he said, sounding just like the man I've known all of my life, "I guess I'll see ya later." I've always loved the rising and falling inflections in his voice. "Pete," I said. "I guess we will."

I turned off the light and closed my eyes and fell asleep until very early this morning, about 3 AM when the texts and phone calls started coming in from friends telling me Pete had passed away. 

"Well, of course he passed away!" I'm telling everyone this morning. "But that doesn't mean he's gone."

Thanks, Pete, for all the wonderful music. The few guitar chords I know were learned playing your songs.

Love,

Rebecca

Different approaches

I am not even quite sure how I stumbled upon this piece published on the New York Times Op Ed page two weeks ago. Sometimes you start out looking for one thing and find yourself going down an unexpected path that leads to something even more interesting. What first came to my attention was some rather virulent criticism of this piece. I had never read the blog that Bill Keller writes about, but having now looked at it a bit I have to say what I have said watching a number of friends confronting serious illnesses: each individual handles this in his or her own way. During the past couple of years I have known people whose reactions to the diagnosis ranged from being overcome by fear and/or anger to embracing what may seem to others unrealistic optimism. I think Barry and I have approached this in our usual way, a serious dose of reality peppered with my really lame efforts at humor.

A small aside: the piece mentioned the MSKCC Caring Canines program. I remember they came and offered this to me during one of my early hospitalizations. I found it amusing because I have never been especially comfortable around dogs. That feeling must arise from some part of the brain other than the one where my tumor was, because it remained completely intact. Needless to say, I declined the offer.

I think Bill Keller is 100% on the mark with what he says, which I interpret as “whatever floats your boat.” Just because someone shuns the military language and does not choose to "fight the valiant battle" does not mean that the person is weak. Such a choice might be an incredible show of strength for some patients, who must also take age and other health concerns into account. Who are we to say?

I sit here just a bit more than 24 hours from my next MRI. Whatever the future brings, I hope I will be able to continue to maintain a balanced view. I have no wish to throw in the towel too soon, but I hope I will know if the time comes to do so. 

The Opinion Pages|OP-ED COLUMNIST

Heroic Measures

JAN. 12, 2014

Bill Keller

LISA BONCHEK ADAMS has spent the last seven years in a fierce and very public cage fight with death. Since a mammogram detected the first toxic seeds of cancer in her left breast when she was 37, she has blogged and tweeted copiously about her contest with the advancing disease. She has tweeted through morphine haze and radiation burn. Even by contemporary standards of social-media self-disclosure, she is a phenomenon. (Last week she tweeted her 165,000th tweet.) A rapt audience of several thousand follows her unsparing narrative of mastectomy, chemotherapy, radiation, biopsies and scans, pumps and drains and catheters, grueling drug trials and grim side effects, along with her posts on how to tell the children, potshots at the breast cancer lobby, poetry and resolute calls to “persevere.”

In the last month or two, her broadcasts have changed tone slightly; her optimism has become a little less unassailable. As 2013 ended, the cancer that had colonized her lymph nodes, liver, lungs and bones had established a beachhead in her spine, the pathway to her (so far tumor-free) brain. She was deemed too sick to qualify for the latest drug trial. She is bedridden at New York’s Memorial Sloan-Kettering Cancer Center, which has embraced her as a research subject and proselytizer for the institution.

Lisa Adams is still alive, still blogging, and insists she is not dying, but the blog has become less about prolonging her survival and more about managing her excruciating pain. Her poetry has become darker.

“The words of disease become words my brain gravitates to,” she pecked the other day after a blast of radiation. “The ebb and flow of cancer, Of life. And so too, Inevitably, Of death.”

In October 2012 I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.

Among doctors here, there is a growing appreciation of palliative care that favors the quality of the remaining life rather than endless “heroic measures” that may or may not prolong life but assure the final days are clamorous, tense and painful. (And they often leave survivors bankrupt.) What Britain and other countries know, and my country is learning, is that every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties. It seemed to me, and still does, that there is something enviable about going gently. One intriguing lung cancer study even suggests that patients given early palliative care instead of the most aggressive chemotherapy not only have a better quality of life, they actually live a bit longer.

When my wife, who had her own brush with cancer and who has written about Lisa Adams’s case for The Guardian, introduced me to the cancer blog, my first thought was of my father-in-law’s calm death. Lisa Adams’s choice is in a sense the opposite. Her aim was to buy as much time as possible to watch her three children grow up. So she is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team. There is always the prospect of another research trial to excite her hopes. She responds defiantly to any suggestion that the end is approaching.

“I am not on my deathbed,” she told me in an email from the hospital. “Periods of cancer progression and stability are part of the natural course of this disease. I will be tweeting about my life and diagnosis for some time to come,” she predicted, and I hope she’s right. In any case, I cannot imagine Lisa Adams reaching a point where resistance gives way to acceptance. That is entirely her choice, and deserving of our respect. But her decision to live her cancer onstage invites us to think about it, debate it, learn from it.

The first thing I would say is that her decision to treat her terminal disease as a military campaign has worked for her. Her relationship with the hospital provides her with intensive, premium medical care, including not just constant maintenance and aggressive treatment but such Sloan-Kettering amenities as the Caring Canines program, in which patients get a playful cuddle with visiting dogs. (Neither Adams nor Sloan-Kettering would tell me what all this costs or whether it is covered by insurance.)

Whether or not this excellent care has added months or years to her life, as she clearly believes, is a medical judgment, and her doctors, bound by privacy rules, won’t say. Most trials of new drugs aim to determine safety and calibrate dosages, and make no promise of slowing the disease in the participants. But any reader can see that Adams’s online omnipresence has given her a sense of purpose, a measure of control in a tumultuous time, and the comfort of a loyal, protective online community. Social media have become a kind of self-medication.

Lisa Adams’s defiance has also been good for Memorial Sloan-Kettering. She has been an eager research subject, and those, I was surprised to learn, are in short supply. Scott Ramsey of the Fred Hutchinson Cancer Research Center in Seattle cited a study showing that only 3 percent of adult cancer patients who are eligible to enroll in clinical trials do so, and, he said, their reluctance has been “a huge bottleneck in cancer research.” Some 40 percent of clinical trials fail to get the minimum enrollment. Adams has been a cheerleader for cancer research in general and Memorial Sloan-Kettering in particular. In fact, she has implored followers to contribute to a research fund set up at the hospital in her name, and has raised about $50,000 so far. “We love it!” the hospital tweeted last week about the Lisa Adams phenomenon. “An important contribution to cancer patients, families, and clinicians! :)”

Beyond that, whether her campaign has been a public service is a more complicated question.

“I am public about this disease in order to shed light on the daily lives of women living with this diagnosis rather than hiding behind the pink party line that is the only one that gets the spotlight,” she told me in an email. (The ubiquitous pink-ribbon breast cancer campaigners have been faultedfor overselling the wonders of early detection and giving short shrift to research.)

Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.

Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.

“I’m the last person to second-guess what she did,” Goodman told me, after perusing Adams’s blog. “I’m sure it has brought meaning, a deserved sense of accomplishment. But it shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”

Love,

Rebecca

St. John state of mind

Writing about St. John yesterday put me in mind to start thinking about the trip. What better way to share those thoughts than with some of the myriad of videos other SJ lovers have posted on youtube? 

First, here are a couple of videos of a drive around the island. One thing you will notice, after you realize that they drive on the left hand side of the road, is that there is virtually no traffic! You do occasionally see cars out, and there are cars parked at the beaches during the day and outside of the various restaurants and bars in the evening, but “traffic” would be an immense overstatement. It is probably a good thing that there is so little traffic, because that makes the switch to the left quite a bit easier. There are really only a couple of main roads on the island, which hook up and essentially become one road going out to the far end where we stay.

Here are a couple of pictures of La Bella Villa, the house we have been renting for a number of years. It is a modest sized house but it suits us very well. It is far enough off the main road to be very quiet, but not so far as to be unpaved or otherwise tricky to drive. We especially love the outdoor shower, which was cleverly constructed to allow for privacy.

Next, I have attached a video of Sloop Jones, who creates wearable art. I have quite a few pieces, not only of clothing but of artwork and throw pillows. The shirts I bought in years past are in larger sizes, so I am anxious to buy one or two new ones.

Last, here are some links to the web pages of some of our favorite bars on St. John. These are low key, sort of grungy places, where you can sit and relax and listen to music. No one there is winning Grammy awards, but the atmosphere is relaxed and friendly, perfect for St. John.

Shipwreck Landing

Island Blues

Skinny Legs Coral Bay St John

It is supposed to be wickedly cold this Tuesday, but hopefully we will make it to MSKCC for my scans and visit with Dr. Deangelis. And hopefully we will not learn anything that will interfere with our plans to leave next Sunday. I am finally letting myself get excited!

Have a wonderful weekend.

Love,

Rebecca

Ten days, but who’s counting?

Having been rather cooped up these past few days, looking out at all that white powder, I have had a bit too much time to think about things. And what I am thinking about is the weather forecast: continued cold and even more snow for at least another week.

Our flight to St. Thomas leaves at 8:00 am on Sunday February 2^nd, just ten days from now. I am happy to enjoy the beauty of that white blanket until February 1^st, when it has to stop long enough to clear the streets in New York, thus enabling us to be at the airport early on the 2^nd.

Of all the things about which I might be obsessing at this point, just days before my next MRI, this is a most welcome distraction! And to get my mind ready for the warm beaches, here is an oldie but still goodie written in 1980 and performed by a “one hit wonder,” Christopher Cross. I thought he had pretty much fallen off the planet, but thinking of that song made me look him up. It turns out that he does have a web page and it seems he still tours. He’s even performing in New York in the fall. Who knew?

Stay warm and safe!

Love,

Rebecca

Those old skits pass the test of time

Something we heard on the news yesterday reminded us of an absolutely hilarious skit done two times by the comedian Steve Martin on Saturday Night Live back in the 1970s. In one, he played a character called Theodoric, Medieval Judge, and in the other, Theodoric, Medieval Barber.

As the Medieval Barber (a predecessor to doctors), a series of patients come to him and, shouting orders in a very authoritative voice to his nurse, Brunhilde (played by Gilda Radner), he diagnoses ailments such as “ill humors” and prescribes blood-letting by leeches. In one instance a man who has broken his legs while being run over by a cart in a drunken stupor is hung by the broken legs. When a young patient dies following his recommendations, her mother yells at Theodoric that he is a fake and does not know what he is doing. He walks a few steps from the scene, and, addressing the audience, imagines leading humanity to a world in which medicine is a science and doctors are able to cure people of their ailments. Then he pauses as if in deep thought of this lofty possibility and says “NAAAAAAA!”

http://screen.yahoo.com/medieval-barber-000000006.html

As the Medieval Judge, Steve Martin hears case after case and attempts to use logic to mete out punishments. One of the criminals is missing his hands and feet, and is now brought before the judge for charges of an illicit affair with someone’s wife. Theodoric thinks out loud, pointing out that his hands had been cut off after he stole something, his feet had been cut off after he had run away, and now, he is being charged with adultery, so…. I am not doing this any justice, and have searched high and low but have been unable to find a video of this one. Anyway, again, Theodoric steps from the scene and speaks to the audience, and imagines a world in which men are tried by a jury of their peers, again ending with “NAAAAAAA!”

I think what reminded me of this was a news report of yet another politician being found guilty of using his position for his own financial gain. What struck me was that the amounts were not all that large, so I imagine that if he went to all the trouble to set up this particular gravy train he likely milked it for substantially more than the amount for which sufficient evidence to convict him was collected. Like Theodoric, these politicians insist on their innocence and want us to believe that they are competent leaders. But fortunately mankind does not have to wait six or seven hundred years to discover that they are wrong.

There is a ton of snow out there and it is wickedly cold. Watching old Saturday Night skits is a wonderful way to pass the confinement.

Stay warm!

Love,

Rebecca

A very busy few days

I hope this finds everyone well. Here in New York it is snowing yet again. Listening to the weather predictions, we left Sharon very early this morning to beat the storm. It was already snowing when we arrived home. Instead of going into the City late this afternoon as planned for my monthly Sandostatin injection, Barry dropped me off at a nearby walk-in care center while he went to pick up a few essential groceries, and we headed home.

It was a very busy few days in Sharon. We drove up on Friday and got settled in. Joshua and Ella came over while their dad was still at work and their mom had an OB appointment. Joshua went home with his dad before Sabbath but we had arranged to have Ella with us for Friday night. She loved the stuffed shells we made, and we worked together on a new Lego kit. When we awoke on Saturday it was raining. It’s hard for me to navigate my scooter in the rain, so I stayed home for the morning while Barry took Ella to synagogue and met up with friends we had invited for lunch. We have known them since we first moved to Sharon almost 30 years ago, and they had been friends with another couple we knew from graduate school days, so we go back a long way. We talked and talked and before we knew it, Sabbath was over.

On Sunday morning, Joshua joined us with Eliana and Maya and their parents for a trip to a nearby bowling alley. I snapped a few pictures of the children bowling and then on a vibrating chair that they all loved. It was a fun morning. Somehow, Dina, Aaron, Joshua and Ella ended up at our apartment eating a lunch of leftovers from Sabbath. Then we split up: Joshua and Barry settled in at our apartment to watch the football game, while I headed over to Dina’s house with Ella. Ella and I played games for the next few hours, including Racko, a game I had not seen in years. Ella, as usual, won most of the games. I truly do not “let her win.” She’s just a lot smarter than I am!

The Patriots had a bad day, but Joshua took it in stride. Barry had bought focaccia at the grocery on Sunday morning and we prepared some toppings, made a big salad, and had a nice dinner. By 7 or so everyone was exhausted after a long and fun day.

Monday morning, Simmie and Ronen and Dina and Aaron had been invited to a celebration of a friends’ daughter becoming a Bat Mitzvah. Since Simmie had been the first to ask us about that afternoon, we got to spend it with Eliana and Maya. Our plan was to play for a little while and then go out to see a movie. We headed over to one of the newer malls to a nice movie theater. But we did not anticipate the hordes of children at the theater, and all the shows were sold out until later in the afternoon.  So we sat and had the lunch we had packed, and then headed over to J.P. Licks nearby for ice cream. I always think of ice cream as more of a summer food, but the children are in the mood for it any time of year and any time of day!

The last item on our calendar was to be with Joshua and Ella while their parents went on a tour of the hospital. Joshua and Ella were both born in Maryland, so this will be the first time Dina has given birth in Massachusetts.  We played a great game of Q-Bitz Extreme, and made a blintz soufflé for dinner. We were just finishing when Dina and Aaron came to pick up the children.

The snow is still falling, and I am just glad to be safe and warm with plenty of food. Barry has decided to cancel his class for tomorrow morning, so we’ll have a quiet day here at home.

Stay warm!

Love,

Rebecca