This is the Babe Great Wheel, made of PVC pipe. It is light-weight and relatively sturdy and waterproof. I plan to take it to fairs and demos - the antique Great is just too fragile for that.

                                                  By
                                         Thomas P. Vogl
                                        January 27, 2010


There comes a time in everyone's life when the realization dawns that the light at the end of the tunnel really is the end of the road. How I got to that point this time around can best be summarized by an edited version of a letter I wrote to my family and a few friends immediately after my return from my January 19 visit to DFCI.

Yesterday (1/19) morning at my meeting with Dr. Hodi at DFCI, I terminated my participation my fifth trial of an experimental drug, almost to the day two years after I entered my first trial. I arrived at this decision reluctantly because I am loath to abandon an experiment, even someone else's, in mid-stream. However, based on my personal view of what the criteria around end-of-life decisions should be (as I have discussed from several perspectives in these Ruminations), the facts and the circumstances made my decision inevitable.

First the facts, then the interpretation.

The facts: I have completed six infusions of MDX-1106, one and a half cycles of four infusions each, two weeks apart. The fourth infusion of the first cycle had to be postponed because of a grade 3 adverse effect, a big increase in alkaline phosphatase (alk phos) as measured one week (a Tuesday) after the infusion. Also, the Sunday night after the infusion I experienced severe pain in my liver for about 24 hours which was interpreted as a possible bleed (infarc) by one the the metastases in my liver. As a result, we postponed the next infusion by two weeks during which time the alk phos returned to near its (elevated) baseline. I also received a unit of blood for my anemia which always makes me feel much better (nothing better than a good vampire lunch!).

The next infusion caused a big increase in my alk phos a week later but not to worrisome levels. The sixth, and last, infusion, two weeks later was followed by another probable infarc on Sunday evening (not as severe as the previous one) and another jump in my alk phos on the following Tuesday. Another problem was that during that seven weeks on the drug, the size of my liver had increased dramatically, to the point where it could be palpated in the left upper quadrant of my belly (the liver should be on the right side; the spleen lives on the left side) and hurt when pressed upon by muscles as I moved or took a deep breath.

The interpretation(s): As Dr. Hodi pointed out, these new drugs can take months before they work and the disease can, and often does, get worse during that time before it improves. It is not predictable whether that will happen with me on this drug. The probability that this drug will cure me is negligible. The most that one can reasonably hope for is stability, that is little or no progression.

Unfortunately, I am already symptomatic. Stability - and the most one can reasonably expect is for the stability to last is a couple of months - with symptoms is, in my philosophy, qualitatively different from being asymptomatic. Realistically, stability for a couple of months postpones death but does not prolong life. No thank you, not only because of the unpleasant symptoms of the disease itself but also the debilitating effects of the drug (lethargy, drowsiness, etc., but also because it pointlessly extends the strain on my caregivers). There is no assurance that the drug will actually produce a few months of stability. Were I asymptomatic I would have continued on the trial.

I told Dr. Hodi that, while I am quitting this trial, if a drug comes along that is shown to be specifically directed at my tumor as shown by genomic or proteonomic studies on my tissue samples, that, based on my condition at the time, I would seriously consider giving it a try. In the meantime, I will go home for palliative care and hope that in the absence of the drug my liver will shrink a little. (Which it did.)

With Dr. Hodi and his staff we made very satisfactory and comforting arrangements for DFCI to stay involved and supportive of my local palliative care.

Naturally, we also discussed what the future may hold. I had arrived at an estimate of survival and I asked Dr. Hodi to come up with his and we would compare notes. Dr. Hodi pointed out that I had already survived significantly longer than the statistics would have predicted and, given my (un)naturally slow progression, he thought I would be in fairly bad shape in six months. My estimate was that I had a 20% chance of seeing 2011. We agreed that these two estimates were commensurate.

So, here I am back home, getting ready to talk at greater length to my local doctors (both of whom I have known for a long time and trust completely), since they will now have a far greater responsibility for my care, eventually sign off on a DNR, and renew my connection with the hospice. All this is routine stuff and I will not belabor the details.

It was more than two years ago, when the liver metastases were first detected, that Dr. Hodi told me that I would be symptomatic in about three months, a figure which I knew was statistically sound. Even though that first time was a premature alarm, of course we did not know that at the time. What I find fascinating is how different my reaction is this time compared to the first time.

The first time my acceptance was immediate. I vividly recall walking down Main street in Vineyard Haven a day or two later, passing Brickman's dry good store, and thinking that although I need a new pair of shoes the one's I had on would last and I would never be buying a pair of shoes at Brickman's again. With minor variations, this scene played itself out repeatedly in the next few weeks with calm equanimity on my part. I was almost instantly at peace with the expected chain of events. We had several very good conversations with the hospice and I started writing these Ruminations. Little did I expect to still be writing them today.

After about four months, when I was clearly not symptomatic (and had started on the first of the four clinical trials under the auspices of the amazing Dr. Geoffrey Shapiro and his equally amazing associate Andrew Wolanski; only my last (5th) trial was run by the brilliant Dr. Hodi), the realization dawned that I was beating the statistics and destined to be around a while longer. I find it most interesting that it took me far longer to fully integrate the fact that I was not going to die in the immediate future than it had taken me to accept the fact that I was. I have bought several pairs of shoes at Brickman's since.

This time, my reaction was very different: I find myself far more reluctant and taking far longer to fully integrate the fact than I am dying than it did the first time. I have given much thought to what the reasons might be. I would have expected that knowing all along that my slow progression will turn symptomatic sooner or later would facilitate integration, but to my surprise it has not done so. I suspect that two factors make the difference. One, that the first time the shock of the shortness of the time, just three months, made the integration more compelling whereas this time 6-9 months seems like a relatively sedentary pace; Two, that the first time the information came from an external authority whereas this time the initiative for trying to establish a time frame came from me and the answer has a far larger margin of error (the inevitable consequence of an N of one in a patient with a very rare disease and unusually slow progression that I attribute to an exceptionally well challenged and trained immune system as a result years spent working in tertiary care facilities).

Two other observations deserve comment. The first is sociological. Much has been written about this society's bizarre attitude about death and dying, an attitude that feels really weird as it impacts on me. I have yet to have any doctor or nurse bring the subject up unless I initiate it and then with greatly varying levels of comfort with the conversation. This societal disease infects even medical providers. No wonder the absurdities of the 'death panels' could have such impact instead of the derision they deserved. On a more personal level, I felt its impact from the response to the letter to my family and friends. I received a response from only three – one a medical professional who offered aid and comfort, one concerned and sympathetic, and one college age granddaughter who immediately responded with a truly heartwarming note asking how often she can come and visit because she wants to have as much 'Tom time' as possible. I am sure the rest did not respond from a lack of caring, but from a lack of knowing what to say, or more accurately, knowing what it is they are allowed to say. (As far as I am concerned, anything.)

What has happened to our society in the past 100 years? We then knew what death and dying was all about – it took place all around us with family members dying at home at all ages and animals dying to provide us with food. Meat did not come pre-wrapped in Styrofoam containers (and please don't think where it was before then) and people did not die out of sight in hospitals. What a loss for us all! Death is as common as birth and needs to be equally celebrated, the one to help us recollect the past and what has been accomplished, the other to contemplate the future and what needs to be accomplished.

The second is a subject I have commented on before. It is the caregivers and the friends with which the patient is in daily contact who bear the brunt of the pain and suffering, not the patient. I am astounded, amazed, and so deeply grateful at how unbelievably well Katherine is bearing up under the strain and I am so deeply grateful for her forbearance and tenacity. Where she gets the strength I will never know and I am eternally grateful.

I suspect that fear of having to be the caretaker, and the pain it entails, may be a driving force in the societal avoidance of any discussion of death.


The collected Ruminations may be found at http://upislandeggs.com/Ruminations.htm
and my e-mail address at the bottom of the page at http://upislandeggs.com/
(I use this circumlocution to suppress spam).

2009 Wrap Up

2010 is starting out with a lot more snow than '09 did! Our annual Winter Solstice Party came close to being snowed out by 15 inches of wet snow. We didn't have much forewarning about the storm and since lots of the food was already cooked, we went ahead and were thrilled when some 60 hearty souls made it up our driveway in 4-wheel-drive trucks. And though that snow melted, another batch is falling as I type. Chickens hate the snow and don't want to come out of their coops.

The memorable bits of '09, aside from the snow, were the arrival of silkies and a Great Wheel. Silkies are a Chinese chicken first described to the West by Marco Polo in the 13^th century. They have soft downy feathers, black skin, black bones, and dark gray meat. They are small chickens, lay bantam sized eggs and are famous for being very good broody hens (i.e. great moms).

The rest of the flock of chickens is fine, though some are getting rather elderly. Inside the house there is a vast flock of zebra finches – I'm sure we have more zeebs than chicks. They are very entertaining to watch nest build, bathe in the fountain over the fish tank and devour heads of lettuce. Our best guess is that about 6 are born, and 4 die, a week. They usually die when the hawk flies over the sunroom and the birds bang into the windows.

The Great Wheel, a very old spinning wheel, arrived in the fall. It had been sitting up in an island farmhouse attic the last 200 years or so. It spins like a dream and was designed to spin wool fast and fine. Katherine is beginning to get the hang of it and probably won't go back to using a modern wheel.

In other fiber news she is knitting the “never-ending afghan” - a queen sized cable sampler afghan and hopes to be finished with it sometime in 2010. As usual we demonstrated at the Fair this summer. Tom sewed little bags and pin cushions on a 1902 White treadle sewing machine. He likes it better than the Singer treadle that dates from the '20s.

We cooked a lot this year, as usual. Giant batches of clam chowder and lemon pudding for Anna & Olivia's wedding. The chowder had an unexpected dividend. We really got into bartering our cheese for quahogs (clams for the chowder) and that has continued. We have traded cheese for world class scallops, dent corn for making tortillas from scratch, lobsters, etc. We cooked two 30+ pound turkeys for the West Tisbury Town Christmas Party.

But, instead of cooking for our 30^th anniversary, we went out to eat with friends and Katherine's mom.

The year was filled with lots of visits from family, a wonderful trip to New York City, vast improvements in our bread baking, and Tom's medical journey with melanoma. (For details of the medical news, please see Tom's Ruminations at http://upislandeggs.com/Ruminations.htm )

We wish you all a happy and safe 2010!

                      Rumination 25. Kudos and Qualms

                                                   By
                                       Thomas P. Vogl
                                       January 1, 2010


In my last Rumination (#24) I lit into the HIPAA bureaucracy, particularly at DFCI, because of their insistence that any and all distribution of patient information must flow through the Medical Records Office, the primary interface between medical records and the public. At that time, and for some time thereafter this interface was a disaster area – three women whose demeanor suggested that they were doing you a big favor providing records and then providing the wrong records, or only half the records requested. Consider my surprise when, about six weeks ago, I went to the medical record office to discover that the three women had been replaced by one woman and a young man who was, I believe, a helper. Wow, what a difference. This woman was pleasant, polite, friendly, and super-efficient. Everything I requested appeared within minutes, letter perfect and nothing missing.This performance was repeated three weeks later. Kudos, applause, and I hope a promotion and raise to the (to me) unknown manager who achieved this transformation. To him/her my heartfelt thanks and congratulations! Way to go!

**********************************************************************************************

It has been a rough three months since I wrote my last Rumination, and I want to thank my friend, Thomas Hodgson, for a conversation that broke through my writer's block.

I did start on the PD-1 inhibitor, MDX-1106, as scheduled. One infusion every two weeks, an easy schedule that allowed me to fly up to Boston in the morning and back home in the late afternoon. Unexpectedly, the two month cycle turned into something of a disaster. I was continuously exhausted and lethargic and any activity that required exertion, such as walking up the basement steps, left me panting and exhausted. To make things worse, just before we started on the new drug, we found that I was developing edema of both ankles, which has now (more than two months later) progressed up my legs to my thighs. So, I am, for the first time, officially symptomatic. The underlying cause of the edema is that my liver is not producing enough albumen to maintain osmotic homeostasis. (Nope, no drug available to fix that.)

The side effects of the drug and the appearance of symptoms also led me to review and reconsider the past two years. What I concluded, being on my fifth experimental therapy (six if you include radiation), is that it has very likely delayed my death, but it has not prolonged my life. What I mean by that is that if I subtract the time that I was debilitated by the therapy from the time by which the therapy delayed my death, the number would be negative. An only slightly exaggerated example: Suppose the drug, instead of making me lethargic, put me into a very light coma that allowed me to be aroused to eat, eliminate, and clean myself, but the rest of the time I was either in my recliner or bed with my eyes closed; suppose further that for four months this regimen completely arrested any progression of my cancer, after which, upon withdrawal of the drug, I regained my former activity level and the tumor progressed at its previous rate. Clearly, my death has been postponed by four months but my life has not been extended by one minute while it has produced four months of misery for my caretakers. It also led me to consider what influence the fact that I am now symptomatic (and that over time the edema is only going to get worse and other symptoms will undoubted appear as my liver function deteriorates) should have on my decisions vis a vis further treatment. I concluded that it should make me more reluctant to accept additional treatment.

Bioethicists to the rescue, please – is delaying death without prolonging life an ethical purpose of medicine or an ethical end point for a drug trial? Is not the proper role of medicine not to delay death but to facilitate, and if possible to extend, life?

On December 14th, I had the scheduled repeat CT scan. These scans are read by two groups of radiologists, the clinical radiologists who read all scans, and a group of research radiologists who read the scans from study subjects using a different method, purportedly more statistically sound. Their role is to evaluate the clinical impact of the drug. The clinical radiologists reported “mild to moderate progression”. The research radiologists found, to quote Dr. Hodi, “rock solid stability”. Hmmm.

Based on all of these these considerations, I was ready to abandon the trial, when a fortuitous combination of circumstances occurred. After the third infusion, my alkaline phosphatase levels shot up to over 800 U, which is considered a grade 3 adverse reaction; so the fourth infusion was postponed by one week. When I returned to DFCI a week later on December 15th, I had pretty much decided to abandon the trial and I was certainly unwilling to to have another infusion on that day, and become lethargic just five days before the Solstice party and all the preparation that this requires. That day's labs also showed that my hemoglobin had fallen to 9.5 (just below the 10 threshold for a transfusion). It took a little gentle arm twisting to persuade Dr. Hodi to order a unit of red cells to be transfused that afternoon. Imagine my astonishment when I awoke on Wednesday morning feeling stronger and more alert than I had in months! I put in four 8 to 12 hour days preparing for the party, feeling tired but not exhausted by the end of each day. On Sunday I enjoyed the party immensely, despite the 15 inches of snow and the stress of dealing with that and cutting back on food preparation for many fewer attendees. We were surprised and gratified that about 60 brave and hardy souls with 4WD made it to our house.

The following day (Tuesday) I returned to DFCI and we had a long and thoughtful discussion on whether and how to proceed. We agreed that I had never received the drug when I was feeling well and that it is the nature of these fully humanized clonal antibodies to take several months to take effect so that there is a point to continuing on the study. Dr. Hodi also said that he placed more reliance on the research radiologists than on the clinical radiologists. So, we decided to go for one more infusion (the first of the second cycle) and see what happens. I insisted that I would only proceed if we kept my hemoglobin levels up. It took some wrangling with the drug company to OK all this, and I did receive the infusion that afternoon.

I confess I expected the worst on Wednesday morning but, mirabile dictu, it did not happen. Indeed I was considerably more tired on Wednesday (and through the weekend) than I had been on Tuesday. But I was not lethargic. What I found particularly telling was that the exertional dyspnia and exhaustion after an exertion was much worse on Wednesday and a few days thereafter than it had been on Tuesday. That would certainly account for why I had been feeling so tired and lethargic before the transfusion.

It is now Friday, New Year's Day, and I am delighted to report that for the past couple of days (a week after the infusion) I am feeling fit and chipper. Not as chipper as without the drug, but within the limits of my tolerance although, not surprisingly, there are better days and there are worse days that test my patience and renew qualms. Three days ago, my hemoglobin was still at 11.5 but my Alk. Phos. had shot up 200U in the week since the infusion. I'll be back at DFCI on Tuesday for another infusion unless the Alk. Phos. does not come back down.

As you can tell, my life is an ongoing saga with decision points every two weeks with all the qualms associated with never knowing what the right decision is and what the consequences of any possible decision are. The road to hell is paved with good intentions.

In the meantime, there are still the practical problems of dealing with the edema. (This is part of a much larger problem of coordinating treatment between local family doctor, oncologist, and patient. See report from NCI at the end of this Rumination.) My local physician and long time friend, Michael Jacobs, (who, luckily for me since it is my liver that is failing, is a boarded gastroenterologist) suggested doing everything I can to keep my feet up and not dangling as they are in the normal sitting position. So, we stole the black arm chair and foot stool from the living room and moved it to my computer and I am sitting here at a 45 degree angle to the table, with the screen also at a 45 degree angle and the very flexible keyboard support (thank you Anthrocart) that also has the keyboard sticking out at the correct angle over my now horizontal thighs. It may look funny but it is very comfortable and my ankles do feel better. Thigh high compression hose, for which our local pharmacist measured me, arrives on Saturday. No diuretics until we see how all the rest works.

The world moves on. Happy New Year to all!

**************************************************************************************************

As many of you know, these Ruminations are read by a (to me) surprisingly wide audience of cancer patients and their families, many of whom are having ongoing interactions with a spectrum of physicians for the first time. It is to them that the following remarks are primarily addressed. I want to emphasize at the outset that while I am using examples from my own experience, I am in no way criticizing or implying any criticism of anyone. What I am discussing here is a matter of personal styles and predilections on the part of both patients and physicians and how these predilections interact, thereby influencing patient-physician interactions. De gustibus non est disputandum.

We all have friends, acquaintances, and family members who have a wide range of responses to medical problems – from wanting to know everything about their condition and treatment (occasionally to the point of extreme attention, discussion, and Googling to the pathologic exclusion of much else in their lives) to those who leave everything up to their physician(s) [and, as does one of my friends, to the pathologic extreme of total denial and unwillingness to talk (and think?) about any aspect aspect of her condition.] In the spirit of full disclosure, I am in the 'I want to know everything' camp and have the advantage of training and experience, as well as access to medical libraries, that permit me to satisfy that need while being competent to distinguish the wheat from the chaff on the web (where there is far more misleading chaff than wheat).

Physicians are taught the skills of interacting with patients, an art known as bedside manner, in medical school and during their graduate training. Of course, as with any other subject, how much a student absorbs has large individual variation. The intent, of course, is to allow the physician to gauge the patient's predilection with respect to information and adjust his/her remarks and explanations to the patient's comfort level. Not surprisingly, a few physicians are superb at this, many very good indeed, and a few cannot manage it at all. It is most important for patients to recognize that the physician's success or failure at achieving a good bedside manner does not reflect in an way on their competence as a physician. There are truly incompetent physicians that have a superb bedside manner and many of their patients love them and continue to go back to them despite repeated medical mishaps. Other truly amazingly competent physicians never learn the art. Difficult and counter-intuitive as it may seem, it behooves patients not to judge physicians primarily on the basis of their bedside manner. In extreme cases this can be amazingly difficult. I know, I have, on occasion, found it very difficult myself, and I certainly know better.

Two examples from my personal experience: I had one doctor who, when any explanation was needed, would give me a brilliant two to three minute lecture on the relevant physiology and pathology. Of course being at the far end of the wanting to know everything scale I just ate this up; my friend who wants to know as little as possible about her condition would probably want to scream and strangle him if he did that to her. I had another doctor who, when I suggested the a symptom might be caused by something, would reply yes, it could be caused by that or other things and quickly change the subject. Perfect response for my friend but one that makes me want to pick him up and shake him until the information on what the other things are and how they interact came falling out. Both are superb and superbly knowledgeable physicians. Despite my knowing this very well indeed, I did not succeeded in completely controlling my emotional response to them. I could not help feel far friendlier and more responsive to the communicator. Our emotional response is part of being human. Remaining aware of our reactions and doing a reality check on the reliability of our emotional responses to a practitioner is, for better or worse, an essential component of dealing with the medical community. It is an unfortunate consequence of human evolution that emotion and belief will trump facts and reality every time, so I urge you that in your dealings with the medical community you keep a watchful eye on your emotional responses to each individual you encounter.

**************************************************************************************

NCI Cnacer Bulletin, April 7, 2009 • Volume 6 / Number 7


Cancer Survivors and Their Doctors Have Different Expectations about Care
As highlighted by a recent report from the Institute of Medicine ¹⁹, the approximately 12 million cancer survivors living in the United States have a complex set of medical needs that must be met in addition to regular care and screening. Now, a new survey of oncologists, primary care physicians, and their patients finds that it is not always clear who is responsible for meeting the medical needs of cancer survivors. And, according to the study authors, these discordant expectations about long-term health management likely complicate the care received by cancer survivors.
The study ²⁰ was published online March 30 in the Journal of Clinical Oncology.
Patients in the study, led by Dr. Craig Earle from the Institute for Clinical Evaluative Sciences in Toronto, Canada, had higher expectations than their oncologists that the oncologists would regularly participate in noncancer-related survivorship care, including routine screening for other cancers. In contrast, primary care practitioners had higher expectations than their patients for their involvement in survivorship care, including follow-up monitoring and treatment for the patients' primary cancers.

"My interest in survivorship grew out of the observation in the clinic that patients would ask me things like, 'Is my thyroid dose right?' or 'How's my cholesterol?' and expected that I would do this type of routine care, when in fact I was just following them for their colon cancer," explained Dr. Earle, an oncologist. "That got me wondering: If they think I'm doing these things and I don't think I'm doing them, is necessary care falling through the cracks?"
Dr. Earle and his colleagues recruited 431 survivors who had received at least part of their cancer treatment at the Dana-Farber/Brigham and Women's Cancer Center in Boston, MA, along with 255 primary care physicians and 123 oncologists who had participated in those patients' care.
Patients answered questions about the degree of responsibility that they believed their oncologist and primary care physician should take in four main areas of survivorship care: surveillance of their cancer, screening for other cancers, general preventive health, and ongoing management of other health problems. Both oncologists and primary care physicians answered questions about their perceived roles in the same four areas.
The agreement in expectations between patients and physicians ranged widely, from 29 percent to 91 percent between patients and oncologists and from 35 percent to 92 percent between patients and primary care physicians. Expectations between oncologists and primary care physicians were discordant, with only 3 percent agreeing on who should be responsible for primary cancer surveillance and 44 percent agreeing on who should be responsible for routine cancer screening.
"We found that there are uncertainties surrounding the perceived responsibilities of physicians and the delivery of care to cancer survivors, especially with respect to primary cancer follow-up and screening for other cancers," the researchers concluded. "With a lack of clarity about which provider is responsible for care, patients may not receive necessary services of demonstrated benefit."
This study highlights the urgent need "for some sort of survivorship care planning," said Dr. Earle. "It all comes down to communication and making sure that whoever is involved knows who is going to be taking responsibility for what actions going forward. We need to provide primary care physicians with actionable information about the specific patients they have in their practice, and we as specialists are able to provide that sort of expertise and those recommendations."
"As the Institute of Medicine pointed out, it's important to develop a care plan," agreed Dr. Noreen Aziz, senior program director of NCI's Office of Cancer Survivorship ²⁸ in the Division of Cancer Control and Population Sciences ²⁹. "One of the aspects of that plan should be to outline who is responsible for what aspect of care, so that everyone is on the same page. Developing such a care plan would be a terrific idea, and I think that the [oncology] field is moving towards that."
—Sharon Reynolds

The collected Ruminations may be found at http://upislandeggs.com/Ruminations.htm
and my e-mail address at the bottom of the page at http://upislandeggs.com/
(I use this circumlocution to suppress spam).

The singles spun on the Great are now on the skein winder. I'm 2-plying them using the new Navajo spindle.

 This is the Great wheel (also called a Walking Wheel or Wool Wheel) that came from the Athearn family on Martha's Vineyard. The wheel was found in the farmhouse attic. It was missing the spinning head, but Harriet had a spare Minor's head to lend. Notice the wheel has 4 legs instead of the usual 3.

 With a little bit of tweaking, the wheel spins wonderfully.  I'll be asking the Athearn family about the wheel, so far I've hear about memories of a grandmother fussing because she couldn't spin because a part was missing (I assume the spinning head). And I hope to get into the attic this came from to look for other fiber processing tools that went with it.  See the last photo for the "matching" skein winder.

The axle is wooden, which may mean the wheel is older, since most Greats have metal axles. (Ignore the yellow on the left, that is just a spacer we put in to make the wheel work.) There are no maker's marks anywhere, that I can find. The wheel is pegged instead of nailed. Below are photos of the peg that holds up the post that holds the wheel.

The bench is decorated with scalloped indents, which also match the scalloping on the ends of the skeiner.

Below is the tensioner.

And here is the very worn skeiner found with the wheel. It will get its own set of pictures!

Tom and I have stuck our toes in the waters of Facebook - so you can "friend" us if you like. Most of his family and some of mine are already on it and I've reconnected with several old friends from high school and college.

The latest small bread project has been real croissants.

This is the third try, and though the first two were edible, these are pretty close to the way they should be. I used the recipe from the King Arthur Flour Baker's Companion and the only thing I did differently was to use a cultured unsalted butter. I bought a new, huge rolling pin for the recipe and it worked beautifully.

I've been debating about whether a big pastry board is worth the cost in both terms of money and storage space. The croissants are rolled out into a big rectangle and only one countertop in the kitchen - which usually has the plastic wrap holder, thermo sealer and electric grill on it - is big enough. Fantes has a wooden one I've been eyeing,  28" X 22.5", and a silicone one as well, though I sent the small silicone pastry mat I had to the Dumptique because everything stuck to it. I suspect I'll stick with the counter, though Tom thinks I ought to ask the guys at Krug & Ryan who made our lovely cutting board to make one for us.

The chickens are doing fine and laying tons of eggs. The zebra finches are having a batch of babies every week or so. We have no idea how many zeebs are in the sunroom, but they don't look crowded. They are, however, eating vast quantities of finch food which has become very hard to get on island, at least in big sacks. Either the feed store doesn't have a big enough order to put in with the bird food company, or, when they do order, the company is backordered on the food we need. Kaytee Forti-Diet Finch food is their favorite, but they will eat whatever finch food we can find!

Spring is here - Tom needs to show me some plumbing stuff in case the flapper valve on the toilet breaks while he is in Boston for a week for his new treatment (he leaves Tuesday afternoon.) 

Tom was asked for his latest bread recipe - the one that started out as the New York Time's No-Knead Bread . And here is his reply:

Unfortunately, a simple question has a complicated answer.  The reason for this is that I have merged King Arthur's sourdough bread recipe with the handling/baking technique of the original no-knead bread as modified by some suggestions in Cook's Illustrated . Consequently, it is no longer no-knead. However, everyone thinks the results are so good that it is worth the effort.

Bye 2008! Hi 2009!

2008 was amazingly good to and for both of us. Tom is stable and feeling fine, the chickens are doing well, Katherine has learned to knit cables, and the island is wonderful.

Tom spent a good deal of time going to Boston for treatments, though that has calmed down to once every three weeks. (You can find all the details about his medical journey as they happen in his Ruminations on this blog or the collected version on our web site upislandeggs.com/Ruminations.htm

We borrowed broody hens and let them hatch out eggs for us. Out of that batch came a truly amazing rooster who battles the crows who swoop down trying to grab the chicken treat. Our suspicion to one of the tricks to having a well-behaved non-aggressive-to-people rooster is to have a mixed breed rooster with lots of Dorking and Brahma in his background and let a very friendly gentle hen raise him. This seems to work better than using pure-breed roosters and us doing the raising.

It is hard to resist taking a hand in the raising though, particularly when the chicken is willing to help Katherine play World of Warcraft (Zaw, 80, Echo Isles).

The summer and fall were full of our traditional weaving & spinning demos at the Fair, helping the Ag Society to get a barn built by the Amish, and a wonderful trip to New York City. Our cooking took one of those occasional leaps forward – Tom adapted the famous no-knead bread recipe to perfection, Katherine mastered English muffins, and we realized that the Swiss style cheeses we make are some of our best. So we have started tweaking them and came up with very memorable Saffron Swiss and Caraway-Cumin Swiss (there is a Dill Swiss aging now – we have high hopes!)

And the ever present conundrum on what to take to parties and picnics in 2008 was solved by skewered stuff – we must have made 6 or 8 skewery things, sometimes with shrimp, sometimes with steak. The Solstice party was held in the middle of an impressive snow storm but Island folk are a hearty bunch and can, mostly, drive in snow so the party went on and was one of our better efforts.

2008 kept the guest bedroom filled up with friends and family – nice visits and new perspectives. Katherine turned out lots of chemo hats and in doing so finally learned to knit regular and bi-color cables (lace knitting is still unconquered territory.) Tom is weaving linen chenille hand towels on his big loom and goes curling twice a week when schedule permits. This time of year Tom is doing interviews of lower Cape and Island kids applying to Columbia.

As for 2009, in January we will celebrate out 30^th anniversary! Wishing you a glorious New Year!

With the kind permission of Dan Waters, here is the poem he read on Dec 9, 2008 at the West Tisbury town party. 

West Tisbury Town Party

When beetlebungs stand bare of bough
And winter stings the air,
And woodsmoke hangs on Brandy Brow
Like wisps of thinning hair,
We waken hungry for a bite
Like some gigantic beast
And tie our kitchen aprons tight
And cook a town-wide feast.

It's quite the neighborly affair -
Warm kisses, mug to mug,
No lack of pies or news to share
With mothball-perfumed hug.
We fill our ears and stuff our face
With casserole and rumor,
And loosen belts for breathing space
To laugh at Skipper's humor.

And what's the potluck's main appeal?
Well, often it's a tossup:
Part cheap night out, part home-cooked meal,
Part good old-fashioned gossip.
We chew the fat; we laugh, complain -
It's almost like Town Meeting,
Except that here the stomach pain
Is caused by too much eating.

At last, when all's been said and chewed,
We end the night's adventure
And take a peaceful interlude
To rest both tongue and denture
Before we launch the second round
With palates hale and hearty
At Tom and Katherine's world-renowned
Hibernal Solstice Party!

© Daniel Waters

We are starting to seriously get ready for our annual Winter Solstice Party, Sunday, Dec 21 from noon to eight. (You are invited!)

The menu is pretty much the same as always

Whole poached salmon decorated to look vaguely like striped bass

Big ham

Chili with all the fixings

Ham and Bean Soup

Wild rice salad

Corn pudding (this is new this year)

Saurkraut and weisswurst (new last year and very popular)

People will bring desserts and finger food.

The weather is always iffy - it may be raining Sunday, the reports are still mixed about whether it will/won't rain/sleet/snow.

I'm off to go make dashi to poach the salmon in and to chop and toast the nuts for the wild rice salad.

I've been knitting little bear ornaments. Here are the first efforts.

The one on the left is very close to the original pattern .   But then I remembered all the chenille we have left from weaving and that is perfect for the bears!

Ten of us will sit down this afternoon and feast on:

A standing rib roast with Yorkshire pudding and horseradish cream on the side

Asparagus with Hollandaise

Classic sweet potatoes with marshmallows

Roast potatoes

Biscuits

Maple glazed carrots

Corn pudding

Fruit salad that is almost a cold fruit soup (Tom thinks it is the best one I've made)

Starters are boiled shrimp with cocktail sauce, smoked bluefish and one of our cheeses and crackers

Desserts are pie and whatever shows up 

Rumination 18. Glad Tidings

By

Thomas P. Vogl

November 1, 2008

The news is all good.  Three weeks ago I had another infusion of the Cdk-inhibitor at half the original dose and with additional fluid support. No serious side effects and it took me just four days to fully recover, for my white count to return to normal, and the tiredness to go away, nor was there any loss of smell or taste. This week we did repeat PET and CT scans that showed not only solid stability (no new spots in my liver) but an observable response to the drug in that the avidity of some of the old lesions had decreased (less dense, i.e., less metabolic activity).  Things are definitely looking up!

With these radiology results (which Andrew, ever thoughtful and considerate, gave me over the phone the same day!), I had the third infusion on Wednesday, again half dose and fluid support. This time the side effects were even less than before.  While still a little shaky  the evening of the infusion, by the next morning (Thursday) I felt fine – no nausea, no diarrhea, and only the slightest of headaches. By Friday morning I felt so well that both Katherine and I were amazed. I was so surprised I went over to the hospital and had them run my chemistry.  My white count was back to normal and while the anemia is still there it clearly is bothering me much less. I can only surmise that my body is getting acclimated to the drug and handling it much better.  This suggests that we could increase the dosage without any major consequences in terms of side effects.

Next infusion in three weeks.

It is clear that I am not the only one disgusted with the current status of clinical trials. The cover of the 10 October 2008 issue of Science features "Clinical Trials and Tribulations" and a 14 page Special Section with 5 articles bemoans the current state of affairs. Even with all that, the section does not come close to discussing the entire spectrum of clinical trial problems. None the less it is worthwhile reading.

Nothing like a brief upbeat Rumination, is there?

Tom and I had a wonderful whirlwind visit to New York City - left Saturday and back Monday.  Even though we had the noblest of intentions to culture ourselves at MOMA and the Whitney , we ended up eating our way through the Lower East Side and Spanish Harlem, puddleducking (looking in all the windows and people watching) along the way. It was splendid!

The cab picked us up at 5:30 AM Saturday, we caught the 6:00 ferry to Woods Hole and the 7:00 bus to Boston and then the train left at 9:40 to New York at about 2:00. It was a very pleasant trip - much nicer than driving or flying. We stayed with friends, Olivia and Anna, in Spanish Harlem. They have darling apartment - much bigger than we expected for that part of the world, and were very close to subways stops. 

One thing we really wanted to do was eat outstanding Thai, and they knew just the place -  Sripraphai in Queens! It had my favorite ever dish Mo Grop (spelling?) which is a crispy pork in chili and basil (on their menu it is C18). Also incredible was item A5, crispy fried Chinese watercress salad with shrimp, squid and chicken. This is now officially my favorite restaurant and it alone is worth a trip to the city.

On the way back we stopped by Olivia's favorite pastry shop to get croissants and a little pine nut tart for breakfast. Chef Samba at Samba Bakery Cafe in East Harlem is experimenting with serving a Moroccan meal once a month or so, and it sounds so very very good!   

Sunday we headed out for a walk through China Town, admiring all the fresh produce and fish of kinds we just don't get on island. Side walk vendors were selling abalone!  Our cooking would take a whole other turn for the better if we could get these kinds of ingredients!  And, at a cooking supply place, we confirmed that no rack for a 16" wok exists, found some little dishes to match a set we are slowly filling in of the rice pattern ware, and found my little rolling pin.  (I am going to learn to make tortillas from scratch and have been asking everyone who knows of tortilla making about a palote - a short, thin rolling pin.  And everyone says to use a sawed off broom handle or sawed off [unused] toilet bowl plunger handle) Apparently Chinese dumpling makers need the same thing, and I found the perfect one. Then it was time for lunch and we met Anna's mom for dim sum at Delight 28 Restaurant (aka Hee Win Lai). We enjoyed the meal very much, and were pleased at how well our own favorite Boston dim sum place, Chau Chow City , stood up to New York.  The real treasure of the meal was Anna's mom, who is even more of a foodie than we are!

We wandered around after lunch, and officially decided we would rather wander around than go to museums.  In Little Italy we discussed cheeses with Lou Di Palo at Di Palo Selects . We stopped somewhere for gelato and ate it while watching Chinese dancers at a street fair.

 Then, for dinner (not that anyone was all that hungry but we certainly weren't going to miss the chance at another incredible meal) we went to El Paso Taqueria in Spanish Harlem. The Quesadillas de la Abuela with home made tortillas, Oaxaca cheese, chicharon, epazote, chilis, and squash blossom was super good. We also had a drink (which is popular but we'd never heard of it and I'm blocking on the name) made of dark Mexican beer, hot sauce and lime juice.

Much science and medicine and food were discussed the whole trip, I turned a heel on a sock and am ready to turn a second one, the chickens did just fine under Glenn and Rosemary's expert care, and we loved looking at all the mosaics in the subway!

A wonderful mini-vacation - and we are almost caught up with our mail, I've made a batch of English muffins for lunch, and need to do a load of laundry.

Rumination 17. Dear Diary

By

Thomas P. Vogl

October 5, 2008

Since so much has happened so fast, and despite the fact that I dislike reading (and writing) diaries, it seems that the best way to describe it is chronologically. At the end of this piece is a discussion of significant changes in cancer research that are just over the horizon and that offer hope to the next generation of cancer patients.

Sunday, September 28. This is the first time in two weeks that, with the help of a few Tylenol, I feel collected enough to write. There is no way around it; it has been a rough time during which I aged at least ten years and was fighting to get the decade back one year at a time. (Which I did in 10 days.)

It started innocently enough on Monday, September 15, with a late afternoon meeting with Dr. Geoff Shapiro and Dr. Bruno Bastos (Geoff’s charming new associate) to go over the protocol for the SCH 717965 study, sign the consent forms, and review the expected side effects, which, it was clear, are significant and unpleasant but, because of the short half-life (1.5 – 2 hours) of the drug were expected to last at most a day or two. I went into this with my eyes open and expecting nothing too awful, and it turned out worse than any of us expected.

Tuesday morning I had a biopsy of the malignant lymph node in my neck to provide a 'before treatment'' specimen. The rest of Tuesday and Wednesday passed uneventfully with PET and CT scans (except for being knocked down by a panel van backing into a parking space while crossing the street to spend some free time at the MFA – minimal damage done and a great show of Art Nouveau jewelry).

Thursday the serious part began. I arrived at the CRC (Clinical Research Center) at 7:00 am, and after some preliminary labs the eight hour infusion began around 8:00 using both lumens of my port, one for the drug and the other for a large assortment of meds including anti-diarrhea, anti-nausea, and antibiotic (the drug is known to drop white counts precipitously albeit briefly).  A scopolamine patch behind my ear (the experimental drug crosses the blood-brain barrier and is known to produce vertigo) and an IV in my arm for blood samples completed the getup.

Things went very well indeed most of the day with no discomfort or nausea. I had a egg salad sandwich and a fruit cup for lunch and was feeling quite chipper, although I knew that the problems would show up near or after the end of the infusion (even though the pharmacokinetics suggest that by then half of the infused drug had already cleared the system). The changes it instigated in a large number of pathways obviously are much longer lasting.

Near the end of the infusion (at least that’s when I think it was because I don’t remember an IV pole in the bathroom with me although I am so used to them that I may be misremembering) the diarrhea hit and with it, much to my surprise, the classic symptoms of shock – a cold sweat and light headedness.  When I came out of the bathroom my blood pressure was down to 70/40 that the prompt administration of two liters of saline (one through each lumen, running wide open) soon fixed.  I am still puzzled by the hypovolemic shock. The diarrhea was not that large a volume and I was neither bloated nor was there any obvious swelling of the extremities. Even after the two liters of saline, my urine output was still negligible. Into what compartment did all that water vanish?

This may be the right point say how impressed I have been over the past year with the astounding competence, caring, dedication, and compassion of everyone connected with the CRC – Cheryl the receptionist, the women who take your vital signs and escort you into the CRC, the entire nursing staff of whom I single out Susan Aikey only because she is my nurse and I have spent the most time with her – every last one of them are amazingly wonderful and competent people as is obvious from having watched them deal with their patients.  If every ICU in the country were staffed and run like the DFCI CRC, medical care would be of much higher quality.

I stayed in the CRC, in my very comfortable recliner, for another hour or so, to recuperate and get my blood pressure to stabilize. In anticipation of this kind of reaction to the drug, I had elected to stay at the Best Western motel that is immediately adjacent to DFCI and is accessible with only a few steps across a courtyard from the hospital complex. I’m glad I did because it took me more than half an hour, with rests in chairs thoughtfully provided by DFCI, for the trip of usually five minutes, picking up a container of wonton soup for my dinner on the way through the food court. I slept like a log.

The next morning, Friday, I went back to the CRC for blood work and vital signs and to make sure my blood pressure had returned to normal. It had. None the less, I felt tired, weak, and unsteady, rather like the morning after major surgery (except for the absence of pain). I had aged 10 years in 24 hours and was very glad to be home after five days in Boston.

I really expected to bounce back by Monday, but it did not happen. To add injury to insult, I noticed that my sense of taste and smell had disappeared. I could not tell whether a patty was beef or lamb! Everything else I could live with, but not that! No cliffhangers – taste did come back two weeks later.

Having gone through all this, I did hope that it had done me some good and the following Thursday (September 25), still very tired and shaky, I went back to Boston for a repeat PET scan. After the scan I met with Andrew who had already reviewed the scan with the radiologist. Andrew was surprised that I was not recovering faster since all my labs, except for white count, had returned to near normal, to which all I could say was “so am I”.  (The temporary abnormalities in the labs, from white count to liver function were pretty amazing – quite a drug.)The results of the PET scan were not encouraging. What we had expected to find was that the ‘avidity’ (the metabolic activity) of the metastatic hot spots had decreased significantly. But, no decrease could be found. I arrived home at 8:30 in the evening, having gotten up at 4:15 am, so tired that I just fell into bed.

Friday morning I awoke feeling tired and shaky as usual but mid-morning, like flipping a switch, I suddenly got back at least eight of the ten years, with only a slight headache, easily treated with Tylenol, as a reminder of what I had been through.  Today, Sunday, the headache is less but still there and the other residual symptoms are fading fast. On Thursday I will go back to Boston to meet with Dr. Shapiro and decide where we go from here.

Tuesday, September 30. Andrew called in the morning to give me surprising news. The drug company (Bristol-Meyers-Squib) that makes the anti-CLA4 antibody, Ipilimumab (my son-in-law, Bill Colbert, tells me that ipilimumab is a Swahili word meaning "my stomach hurts") last Thursday informed all the clinical trail centers that any patient not on the drug by the next day (last Friday) will not be allowed in a trial because of "manufacturing problems". This was the drug I was planning to go on if the Cdk-inhibitor did not work. I am reliably informed that drug companies have pulled this stunt before. My disgust knows no bounds and there is no recourse. Free enterprise, Republican version, in action. Is it not time for NIH and FDA to define, run, and publish the drug trials, combining drugs from different companies as suggested by research and patient needs (at drug company expense)?

Friday, October 3. Yesterday, I went up to Boston on the 6:00 am boat, as usual, to meet with Dr. Shapiro to decide what to do next. That morning's lab results showed that I was as back to normal, as I felt. We had an extended and very fruitful conversation reviewing the options now that Ipi is no longer available. There are basically two options. One is to start on one of three currently available Hsp90 inhibitors, one of which, by Schering, had demonstrated efficacy against canine mucosal melanoma. We agreed that if, note the big if, we knew that my melanoma had one of the aberrant pathways that Hsp90 modulates then it would certainly be worth trying. The reason that study is not permitted is as pathetic as it is insulting: For a biopsy tissue sample to be analyzed/sequenced, the patient must sign an IRB approved release. One of the main reasons to do the analysis is not just for the patient but for the generation of a database of cancer cell characteristics (see below). At this point which characteristics will turn out to be important are unknown. If they were known, there would be no need to do the research. But the IRB insists that a patient cannot sign a blanket release, for example, "I allow the pencil tip size piece of tissue taken from me to be used for any legitimate research purpose that does not identify me without my explicit permission" is deemed unacceptably broad by IRBs that require the specific end purpose(s) to be explicitly stated. Talk about a catch 22! Joseph Heller would be proud.

It also turns out that the PET scan last week that showed no decrease in avidity is a very poor predictor of the drug's efficacy. It was expected to be, but it turned out not to be; that's the nature of research. But the patient must still go through the two hour procedure anyhow, because it was written into the protocol approved by the FDA and that remains cast in concrete. The straightjackets imposed by the FDA and the IRBs are clearly counterproductive to patient safety and comfort, optimal care, and cost containment.

So, what we decided, since the drug certainly was having effect on me (the disappearance of my dermatitis and my hair loss both demonstrate effects on rapidly dividing cells) was to continue as we had planned for the current cycle but at half the drug dose. The next infusion will be next Thursday. Then, as originally planned, three weeks later another infusion and a repeat biopsy and definitive PET and CT scans that will give a realistic reading on whether the drug works on me or not. I am very comfortable with this plan. At half the dose, I expect to recover from the side effects far more rapidly.

***************************************************************************************************

It should not come as a surprise that I have been contemplating the state of cancer research and cancer drug research, different but interrelated subjects. I was therefore utterly delighted with the editorial in Nature (Nature 455: 138, 11 September 2008) which starts:

"Beneath cancer's daunting complexity lies a simplicity that gives grounds for hope.

"For several years now, large-scale cancer-genome studies have made it increasingly clear that a tumour cell is a genetic disaster area littered with mutations that differ not only from one type of cancer to the next, but from one patient to the next. Pharmaceutical companies have had to accept that Gleevec, a drug that treats a form of leukaemia by targeting a specific gene product, is almost certainly going to be a rare exception in the therapeutic arsenal; most cancers are far too complex to yield to such a magic bullet.

"That message was hammered home with new statistical power in three studies released last week."

The three studies focused on three different solid tumors. To make a long story short, the results are that

"The studies took a more comprehensive approach than previous large cancer-genomics studies, by simultaneously analysing genetic sequences, copy-number variations, expression arrays and other forms of data. The Johns Hopkins team looked at all the active genes in tumours from a few dozen patients; the Genome Atlas team looked at selected genes in tumours from 206 patients. Taken together, their results show that no single mutated gene lies at the heart of any of these tumours. The pancreatic tumour samples, for example, showed an average of 63 genetic mutations each — with considerable variation from one sample to the next."

Shortly thereafter, the New England Journal of Medicine (NEJM 359: 1367-1380, 25 September 2008) published a review article on the molecular origins of cancer, focusing on non-small-cell lung cancers, about 85% of all lung cancers. By comparing the rate of genetic abnormalities among the two types of non-small cell cancer (Squamous cell and Adenocarcenoma) and small cell cancer, they found that except for abnormalities in p53 which appeared in 50 – 75% of all the tumors, almost all of the other mutations occurred less than 20% of the time. These low percentages strongly suggest to me that we are not aggregating the data in the right way.

Taken together, these results lead to some obvious and far more interesting less obvious conclusions. The obvious ones, mentioned in my previous Rumination, is the demise (the sooner the better) of the block buster model of pharmaceutical research and with it, the demise of the one-drug-company-sponsored, one-drug-at-a-time clinical trial.

The less obvious ones deal with how the data are being analyzed, a problem that has its roots in the organization of medical education and practice, which is organized almost entirely along organ system lines. Consequently, I propose asking the question (which I have not yet seen in print but expect to momentarily): Given the poor data aggregation displayed above, does it make really sense to sort cancers primarily by organ and secondarily by cell type (as all four of these studies have done), or does it make more sense to cluster by molecular profiles? I submit, as a testable hypothesis, that the initiating processes responsible all cancers, only secondarily modulated by organ system or cell type, will be a well defined subset of mutations and epigenetic events or precursors out of the broad spectrum of genetic and epigenetic changes that have been recorded to date.

Put another way, cells throughout the body are more alike than they are different, particularly when it comes to the cell's internal reproductive mechanisms and controls, which are what goes awry in cancer. I therefore suggest that the research effort focus on obtaining a sufficiently large number of genetic, epigenetic, copy number, and proteonomic profiles of individual cancers of all types and from all organs so that the statistical power of cluster analysis and other statistical techniques (see the 4 September 2008 issue of Nature for a focus on "Science in the petabyte age") can be brought to bear on the question of which cancers are similar by virtue of their molecular profiles, not by virtue of the organs or cells involved. My prediction is that the number of these clusters will be far fewer than current pessimistic estimates.

This, in turn, leads to the currently unpalatable conclusion that clinical oncology as well as cancer research needs to be reorganized by molecular profiles rather than organ systems and that drug companies must develop mechanisms for cooperation on drug development and trials that focus on multi-drug treatment of the (soon to be identified) common constellations of molecular profiles.

One organization that agrees with this analysis was recently founded by my friends Dr. Jennifer Carter and June Kinoshita. They call it N-of-One. If you are interested in what they are doing and planning, their website is N-of-One.com. Because the website is still under development you will need to go to the 'REGISTER' tab in the upper right hand corner and enter a password: newvisitor – no further registration or identification is needed. [Publication of the password in this blog has been authorized by Dr. Carter.]

Note added in proof: I urge you to read the Commentary by Heng in the current issue of J. of the American Medical Assoc. [H. H. Q. Heng, The Conflict Between Complex Systems and Reductionism, JAMA 300:156-1581 (October 1, 2008)]. He concludes (but do read the whole article):

"The unpredictable nature of the [genetic and epigenetic] heterogeneity will force the consideration of the significance of clinical exceptions, because complex disease results in highly diverse responses that include many exceptions to the general rules. Furthermore, heterogeneity is not simply "noise" but a key component of evolution directly related to the human disease conditions and must also be considered when designing interventions such as cancer therapies. Clinical therapies must be individualized, balancing the parts of the system and the response of the patient as a whole. Clinical research on pharmaceutical agents needs to focus more on the differential responses within diverse patient populations."

Nation is Terry Pratchett's "latest" YA novel though it doesn't take place in Discworld or any of his other worlds. Nation is set on a world more-or-less parallel to ours in something like the late 1800s. Two story lines about disasters - a tsunami in one line and a flu epidemic in another, bring two vastly different adolescents together on a deserted island. The islander boy and proper British girl have little in common except trying to survive, and then to build a nation out of what the sea washes up on the shore. This is very different from Pterry's other works (more like the Bromiliad Triology than anything else), though the footnotes he is famous for are sprinkled throughout the book.

Pratchett fans have been wondering if his early-onset-Alzheimer's has effected his writing. Judging by this book, it most certainly has not. This is one of the best books he has written lately - certainly the best for YA - and, though more could be written about this world, it is a stand-alone. It is delightful that Pratchett can write so wonderfully without all the beloved underpinnings and folklore of the Discworld. (Speaking of folklore, I've just started Folklore of the Discworld , co-written by Pratchett and Jacqueline Simpson. No opinion yet.) The book is out now in the UK and releases in the US in a couple of days.

Flora's Dare is the sequel to Flora Segunda , by Ysabeau Wilce. Tom and I loved the first Flora, and love the second just as much. You really need to read these in order, since the second book explains various of the questions Segunda left up in the air. Just wait till you meet Tiny Doom!

Chalice is what I've just finished reading this afternoon. It is by Newberry Medal winner Robin McKinley (The Hero and the Crown ).  I re-read Hero and the Crown and its sequel at least once a year, but haven't been grabbed by any of her other books - they were OK but not moving. Chalice changes that. It is grand! It invents its own fantasy mythology, which is refreshing, about a young woman who inherits the position of tying the land to the rulers by means of what she mixes in cup for the rituals that bind wordds to deeds to land. Also lots about bees and a word that has something to do with milk that I'm trying to track down. Anyone know what hilliehoolie might be? After I finish the blog I've go to drag down the OED and try to find it. Anyhow, a splendid book that is too short, but I hope for a sequel.

Magic Thief by Sarah Prineas is a more typical wizard-and-his-humble-apprentice-in-somewhere-like-London. But it is well illustrated and well written and its characters bump the boundaries of their stereotypes. It is for a younger audience than the others, but I enjoyed it.

The crew got an earlier boat than expected last Monday and we scrambled to get lunch ready. They arrived about noon, had ham sandwiches, coleslaw, biscuits, bread and fixingings and plum cake and were on the job by 2:00.  While the women and children got organized in the houses, the men started putting up the uprights on the already prepared foundation.

The lumber had all been pre-cut and drilled, bundled and labeled by the crew in Pennsylvania so it was like watching a huge 3-D jigsaw go together.

This photo is after they were at work a few hours on Monday. You can see the massive framework is well underway. The beams are notched and slotted into the uprights - Tom says it is mortised &pegged, post & beam.

And this is what it looked like just after daylight on Tuesday morning. All the posts are up, the cross beams are being lifted up by the crane operator that works with this crew, and even some siding is on. 

 Here is one of the cross beams coming down.

And this is the barn by Wednesday dusk. The door was hung, windows put in, roof was shingled and all was finished by Thursday lunch (except for the side shingles that will happen in two weeks or so.) Amazing!  

The new barn fits nicely right beside the old animal barn. It is about the same size as the old one and, once the shingles have weathered, it will just blend into the landscape.

Here is a closeup of the inside of another barn built by the same crew.