Musings of Scoobydoobeach

Bottomless Bucket List and Beauty of Nature

2012-01-22T11:37:00.000-08:00

When one has a serious disease, one thinks about creating bucket lists. In my opinion everyone should have the bucket list anyway and try to live life as though the amount of time you have left is uncertain. I did not adhere to that dictum myself for most of my life but now I have an endless list of things I want to do, or perhaps more appropriately, a bottomless bucket.

Incidentally, oxforddictionaries.com says that bucket list is a very recent term, popularized by the 2007 movie of the same name. However, June Thomas in Slate traces the term back to 2004 from a book and even finds a use as early as 1993 in a NLRB report. I seem to remember hearing the phrase before the 2007 movie but certainly it is likely that the movie helped the term become ubiquitous.

In any event, I decided with the Better Half that we would see Yosemite National Park in all four seasons this year. We actually started in early June 2010 after my first and horrific round of chemotherapy, thereby catching the park in Spring. We returned in late June, early July 2011, October 2011 and last weekend, January 13-16, 2012. We got somewhat representative weather in the first three trips. However, the trip last weekend wound up being very unusual because Yosemite did not have any snow.

The absence of snow was good news and bad news for me. The bad news was that we really did not get the typical winter pictures at Yosemite and we did not get to see Badger Pass which is only open when there is snow. The good news was that we were able to go on roads that are normally closed during the winter, specifically Glacier Point and Tioga Pass.

On the first day we were in the Valley, we went to the Tunnel View on our way to catch sunset at Glacier Point. At Tunnel View, a reporter from channel 2 in San Francisco interviewed us because Yosemite had decided to allow free entrance for the holiday weekend due to the lack of snow. We are in the beginning of the interview. Don't blink or you will miss us.

YOSEMITE: Vistors to enjoy free admission and unseasonable...

We then were able to get to Glacier Point about a half hour before sundown. Here are four pictures of Half Dome taken from roughly the same point in the four different seasons:

Late spring 2010

Early Summer 2011

Autumn 2011

Winter (January) 2012

The other wonderful place we were able to visit by car was Tioga Road. We were told on our trip there on January 15, 2012 that this year is the first since 1933 that the Tioga Road has been open in winter. The road closed two days later on January 17, 2012 as storm systems moved into the area, unfortunately including a deadly storm last night in Yosemite Valley, reminding us that nature can be beautiful and baneful.

On Tioga Road we stopped at Olmsted Point to get a sun-riddled photo of the back side of Half Dome and a distant shot of Tenaya Lake:

View of Half Dome from Olmsted Point

View of Tenaya Lake from Olmsted Point

Tenaya Lake

Then we moved on to Tenaya Lake which was frozen solid and readily suitable for ice skating for the first time since 1930. Based on the tip from our waiter at the Ahwahnee, my daughter bought a pair of used skates from the Curry Village ice rink and took off across the lake in what she described as an unbelievable experience. True, the ice was not as pristine as that in an indoor rink but she said that being able to skate the distance of two olympic rinks in the beautiful outdoors was spectacular. Even I walked out on the ice after discovering that it was less slippery for my UGG boots than the pebbles or leaves on the hills down to the lake. My daughter's dog enjoyed a run as well.

Catch Foot Spiral on Tenaya Lake

Taking Off on Tenaya Lake

Novella enjoys the ice on Tenaya Lake

A dog and her boy

Returning from the other side of Tenaya Lake

ADDENDUM (JANUARY 27, 2012) According to an article in the Los Angeles Times today (1/27/12) the 1933 date above was the first date records were kept so it may indeed be much longer than 79 years since Tenaya Lake and the Tioga Road were open and clear of snow in mid January. As for the causes of the anomalous weather this year (other than the fact that I wanted snow and thus the weather thwarted me), the article cites both global warming projections and natural volatility of weather in California. All I can say is that I am glad I saw Yosemite two years in a row after record snow fall so that the waterfalls were full and plentiful.

Boxing Out the Box Office

2011-12-30T13:37:00.000-08:00

Last night I went to a local movie theater for the first time in ages. I had to rely on my daughter to find the theater and where to park at Del Amo mall in Torrance. That area has certainly changed in recent years including the closing of the large Borders store where we spent many weekends for entertainment when our children were young. Another "disruption" because of the internet.

I remembered why I do not like seeing movies in the theater anymore. The place was packed, which is good given that the movie we saw was made by my studio. But, even though the movie was adult fare, teenagers still were there, being their teenage selves. One couple talked out loud throughout the movie and laughed at two violent scenes where laughter was particularly inappropriate. And at one of the more dramatic parts of the movie near the end, the house lights came up making it very difficult to see what was happening on the screen. The air was filled with the odor of popcorn and chemicals meant to simulate "butter flavor". The previews were embarrassingly violent and silly.

In contrast, I watched another recent movie, a Golden Globe contender, on my HD home flat screen the other night. That experience was much more enjoyable. I do not watch as many movies as I once did because strangely I do not have the patience to sit through most of them anymore. This movie at home however started slow but captured my interest as it went on. Perhaps I will watch more movies on demand now.

Box office receipts are down this year after a few years of rebound. However, in the past 10 years, as reported by Ben Fritz and Amy Kaufman in the LA Times today, box office attendance has been regularly dropping, now about 20% lower than its high point in 2003 and lower than anytime since 1995. See also here and here at page 6, both of which suggest the high point was in 2002. Ticket prices are certainly higher than they were ten years ago but still very reasonable in light of inflation and particularly when compared to other forms of entertainment. See here at page 12.

Compared to other industries, the entertainment industry is not a high profit margin industry. In Fortune 500's most recent ranking of industries in 2009, the entertainment industry ranked 51 out of 53 in return on revenues. In contrast, the internet industry (e.g. Google, Amazon, eBay) was second and pharmaceuticals was third. This low profitability ranking of the entertainment industry occurred at the same time internet industry supporters were complaining about record box office receipts and the "obvious" lack of impact on the industry by piracy.

The La Times article cited above offers that video on demand is the cause of the decline in theatrical attendance. I like video on demand and I am willing to pay legitimately for it. Unauthorized downloads and streams of motion pictures that solely profit the pirate sites are another form of video on demand, either for free to the consumer or at a lower price than legitimate video on demand. If video on demand is indeed driving people away from the theaters, let's not ignore the impact of pirate videos which are another form of video on demand. To say piracy has had no impact on my industry and the average people who work in it is just dumb.

DISCLAIMER: THE VIEWS IN THIS POST ARE MY OWN. THEY ARE NOT MEANT TO BE AND SHOULD NOT BE CONSTRUED TO BE STATEMENTS ON BEHALF OF MY EMPLOYER.

Useful Gossip

2011-12-29T12:56:00.000-08:00

In reading The Rogue: Searching For the Real Sarah Palin by Joe McGinniss, I have discovered that I love certain types of gossip. McGinniss' sources for the book, to the person, have some serious issues with Palin. Some seem to engage, at times, in the same "10th grade mean girl" mentality of which Palin is accused. For example, several sources claim that Palin was an absent and neglectful mother. One supported the contention by saying that she never showed up at her son's hockey games, notwithstanding her holding herself out as the ultimate "hockey mom" ferrying her son all the time to games all over the place. As a "soccer mom" myself, I spent most of my weekends for a number of years going to soccer games all over the place, sometimes leaving at ridiculous hours of the morning to get to places two hours away. But I am not sure I could tell you which parents never showed up although I am sure some did not. In a more extreme example, one Palin acquaintance said that Palin's children were "dirty"; no one ever cleaned out their ears. I started to think about whether I regularly cleaned my children's ears. I certainly bathed them every day but ears? As I read about people complaining about Palin's children, I felt as if no one in Alaska must ever get out the high school mentality.

The book does however provide new information to me about Palin that is quite disturbing, even given my already low opinion of her. Here are some things I have learned:

Palin had a history of quitting jobs. Before she quit as Governor of Alaska, she quit the job she had with the Alaska Oil and Gas Conservation Commission, an appointment she received for her political support of the Governor of Alaska in 2003. Although she made it look like she was resigning to protest ethical problems with one of her fellow commissioners, McGinniss reports that Palin did not like the long commute from Wasilla to Anchorage.
Palin was an uber-evangelical Christian. She belonged to an Assemblies of God church in Wasilla that was a "rogue" church itself. Palin believes in witches as a manifestation of evil, and a GPS like system for tracking evil in the world. She also believes that the earth is only 6000 years old and men walked with the dinosaurs.
Palin's son Track, as a teenager, had trouble with the law and used drugs, including cocaine, and did not graduate from high school. Sarah and Todd forced him into the Army, turning him from a political problem into an asset. I stupidly thought that his going into the army was voluntary and grew out of a crazy love of country nurtured in an ultraconservative family.
The circumstances surrounding the birth of her son Trig have been construed to show that Palin may not be his birth mother. She apparently did not look pregnant, even on the plane trip back from Texas to Alaska where she gave birth over a day after her amniotic fluid reportedly started to leak during the night. McGinniss says that he interviewed doctors about her and Todd's actions in response to the leaking fluid and they opined that if she were pregnant those actions would have been gross negligence. Rather than go to the hospital, Palin gave a speech in the afternoon, flew from Dallas to Seattle , waited for hours in the Seattle airport to continue her flight to Anchorage and then drove to Wasilla where she finally went to the hospital.
Palin was racist as a young woman and acted on her beliefs when she became governor by firing people of color in her administration.

Janet Maslin dismisses McGinniss' book by saying that most of it is "dated, petty and easily available to anyone with Internet access". However, she must have followed the nooks and crannies of information about Palin more than I, or anyone I know, did. I am inclined to agree with McGinniss that mainstream media avoided these issues when Palin was running for national office in 2008 and continue to avoid them today. So as far as I am concerned, if you push aside the gossipy tone of the book, the book does a public service by bringing more of this information about Palin into the mainstream. If I wasn't scared before, now I am even more scared.

Have Yourself A Merry Little Christmas

2011-12-24T08:29:00.000-08:00

Our Christmas Tree 2011

Yesterday while I was reading an article about John Rutter, I started to feel a bit of the Christmas spirit. I must confess that so far this year I have not felt much like celebrating. Christmas has become a bit of a roller coaster. Two years ago I was in the hospital recovering from major surgery, requiring an emergency blood transfusion. I was starting my cancer odyssey, a journey on which I still travel having just finished another cycle of chemotherapy. Last year, I was in remission and feeling wonderful to be home for the holidays with my family.

This year, I am missing my son and grandson who just left to return to Micronesia to spend Christmas with my daughter in law and granddaughter. My daughter and her boyfriend are here, having overlapped with my son and grandson for a few days so we could at least have Christmas 1.0 together last Sunday. The tree was delivered last Saturday, a bit late and not as nice as the one I got last year, so I felt a bit disappointed. However, my son stayed up most of the night decorating it and wrapping presents by himself. It reminded me of the many times I was up into the wee hours, either alone or with my husband, wrapping presents and putting them under the tree.

So it is no surprise that this morning I was flooded with memories of Christmas Eves past. One year my husband and I spent a chunk of Christmas eve in our local mall picking up last minute gifts because we felt we had not gotten enough for people. Our children were teenagers at the time and I remember buying overpriced jeans for my daughter just to see the look on her face when she got something so unexpected. Unfortunately, this year, given our finances, I will have to be satisfied with her adult gratitude, as a poor college student, for anything we get for her.

On another Christmas Eve, my husband and I found ourselves without a Christmas tree. We drove all over looking for one, either real or artificial, but kept coming up with nothing. After a few hours, we found a small lot with a handful of trees left and got a reasonably decent looking tree, thereby salvaging our tradition.

Of course, we had one Christmas Eve like the one in the Jingle All the Way, although not quite as extreme. Let's just say that someone in this family beat out another parent trying to get the last Teddy Ruxpin in Toys R Us on Christmas Eve. Our son, then 3 years old, was one happy boy on Christmas morning.

I also, for many years, sent out what I hoped was a funny Christmas letter to friends and family, with a picture of our family. The last time I did that was about 6 years ago when my grandson was a baby. These days we don't get many cards anymore at home, and at work I get as many e-cards as I do paper cards. I wish I could still write a funny letter. I had an excuse during the years when things were not going so well but this year I have plenty of good things to report. My daughter has a 4.0 grade point average her first semester at UC Berkeley. My son is off in Micronesia with his beautiful family, including my grandson and 2 year old granddaughter, after spending two months here with us to be treated for back problems. He is applying to masters programs for next year. My husband and I are both in remission from cancer and trying to live life to the fullest. My mother in law, who still lives us, is puttering along at 86 and my son's sister in law, who also lives with us, is finishing a medical assistant training program which will hopefully allow her to get a job next year. All good things, but my days of sending out cards are over, just like my days of going to midnight mass and feeling the need to dress up for most occasions. "When I am an old woman, I shall wear yoga pants and t-shirts, although not in purple" (apologies to Jenny Joseph)

John Rutter told the reporter, in the article referenced above, that the World War Two song Have Yourself a Merry Little Christmas "encapsulates the aching nostalgia of separated families and treads the fine line between happiness and heartbreak, which is what being human is all about." Perhaps not so surprising after all that this song should put me finally in the Christmas spirit.

ADDENDUM The original song was apparently quite depressing. Judy Garland performed a slightly more positive version in the motion picture Meet Me in St. Louis, and this version was popular during WWII. Frank Sinatra asked the songwriter to make the song more "jolly" for his version, which is the one we now hear the most.

Help Keep Other Sisters Alive

2011-12-17T08:33:00.000-08:00

Tis the season of giving and I am swimming in things I have received as gifts in the past for which I have no space in my house. So I think many times that the best gift we can give is to find a cause to support wholeheartedly. For two years now, I have sponsored a woman's education toward job skills through Women for Women International (WWI). I now have sponsored two women and am adding a third for my daughter to sponsor. The two women I have sponsored are from Africa-- the first from Nigeria was born in 1988, is single and has 1 child . She attended her program in September, 2010 through February 2011. My current "sister" lives in Rwanda, is between 25 and 30 (apparently there are no birth records) and will be supported in the program until August 2012. I love the fact that they call the women our sisters. It gives another meaning to Help Keep a Sister Alive.

In case you do not think women in most areas of the world need our attention please take a look at this YouTube video. It is not produced by WWI but certainly supports the underlying mission of WWI, as well as many other worthy charities for girl's education. See e.g here

The Last Dosage-- No More Doxil for the Foreseeable Future

2011-12-13T18:20:00.000-08:00

Doxil.com

UPDATED DECEMBER 13, 2011

Janssen just released the last dosages of Doxil, reportedly enough to treat 1000 people on the waiting list. Of course, it is too late for me. I am finished with this course of chemotherapy and hoping for the best so, if my turn on the waiting list comes up, someone will take my place .

As I stated in my last post, European Medicines Agency asked Janssen three weeks ago to notify doctors to monitor for possible side effects, such as sepsis, in use of Doxil as a result of quality control issues at its contract manufacturer, Ben Venue Laboratories (BVL). Janssen issued a letter to physicians today, December 12, 2011 with the release of the last doses of Doxil. Here is what it says about quality control issues:

We are aware of some recent information about the quality shortcomings at this contracted supplier of DOXIL®. We have performed thorough quality reviews of this additional supply of DOXIL®, which included a review of production procedures and extensive sample testing. Based on these assessments, Janssen Products, LP has now approved release of this supply from BVL for distribution through our patient allocation program.

Note that there is no mention of monitoring side effects whatsoever. Janssen instead decided to do "extensive quality reviews . . . and extensive sample testing." I hope they are right. Sepsis is not something to ignore and of course, physicians receiving this letter may not have been following the warning from the EMA so they would not have the heightened level of concern that EMA wanted Janssen to communicate about Doxil.

Janssen also seems to be softpedaling the "shortcomings" at Ben Venue. The FDA last week issued another 483 report dated December 2, 2011 about extensive quality control problems at Ben Venue, including finding urine in a container, leaky roofs still not repaired and metal particles in a product. Indeed the EMA broadened their recall to include two additional drugs and issued warnings about another two additional drugs.

And, confirming what I have been saying for some time now, Janssen acknowledges that there will be no Doxil for the foreseeable future. Janssen states in the 12/12/11 letter to physicians (which is stated in very similar wording in the Janssen President's letter of the same date):

This limited supply represents all of the remaining DOXIL® that had been previously produced by BVL. Please be advised that this modest supply of DOXIL® will not be sufficient to supply everyone on the wait list. We want to emphasize that this limited product availability does not foreshadow the potential for any additional supply of DOXIL® in the immediate future as we have no further information from BVL on when manufacturing will resume at its facility.

The problem, as I also mentioned in earlier blog posts (see e.g. here) and as Peter Loftus reports, is that other chemotherapies are in shortage. I read over the weekend on an Inspire.com bulletin board for cervical cancer that women are having trouble getting cis-platin, a mainline treatment also of ovarian cancer. Carboplatin is also in short supply and was repeatedly discussed in last week's Senate Finance Committee hearing on drug shortages.

Members of the Finance Committee seemed to be angling to remove the price increase cap from the Medicare Part B drug schedules so that the marketplace would correct for the shortages because financial incentive would be returned. Unfortunately, I think the free marketplace is why this issue has come to a head. A report issued in October 2011 by the Assistant Secretary for Planning and Evaluation (ASPE) of the Department of Health and Human Services (HHS) entitled Economic Analysis of the Causes of Drug Shortages suggests that the problem results from generic manufacturers avoiding excess capacity rather than the Medicare Part B cap. Drug shortages only exist in 10% of sterile injectable generics covered by Medicare Part B and, contrary to testimony before the Finance Committee by the conservative American Enterprise Institute representative, consolidation of the sterile injectable generic drug industry did not cause the shortages. The report said in a section entitled Supply:

Consolidation at the corporate level would be a significant contributor to drug shortages only if the consolidations have resulted in closures of manufacturing facilities that reduced production capacity. Conversations with leading generic drug manufacturers, and data from the FDA, indicate that the consolidations have not resulted in decreased production capacity or in the closure of manufacturing facilities.

The ASPE-HHS report concluded that the shortages resulted from long term choices by generic manufacturers to ensure that there would not be surpluses of certain highly specialized drugs for which they got lower prices because of limited demand. The report explained in a section entitled "Market Behavior":

Our analysis suggests that this change in capacity utilization stems from a combination of the effects of the increase in volume of chemotherapy drugs used, the expansion of products available for generic manufacturing because of patent expiration, and the complexity of manufacture and requirements for Current Good Manufacturing Practices. Entry cannot occur quickly in the sterile injectables industry because of the high fixed costs of specialized production and regulatory protections. Furthermore, because shortages are uncommon and occur in drugs for which capacity is highly specialized, and because there are few penalties for failing to supply contracted drugs, there is no financial return to investing in excess capacity — that is, capacity that is not used outside a supply shortage, and thus earns no revenue except during a supply shortage.

So, according to HHS this is a market driven phenomenon completely relating to drug companies trying to maximize profits and essentially preferentially choosing to manufacture more of higher price drugs. It is the marketplace at its best and worst, which is why I would advocate that these types of life saving drugs need to be regulated for the long term to ensure their supply when the profit seekers cannot be bothered.

Update on Doxil Production-Possible Quality Issues?

2011-12-05T08:09:00.000-08:00

According to the WSJ and our intrepid Doxil shortage reporter, Peter Loftus, the FDA is working with Johnson & Johnson to address the fact the Ben Venue Laboratories has completely shut down production of Doxil as of two weeks ago (November 19, 2011). However, the chances of Doxil being available anytime soon, in my opinion, are slim to none. I would love to have J&J really explain, other than in the vaguest generalities, why it will take some time to fix this situation but all of these manufacturing processes are shielded by the assertion of confidentiality due to proprietary interests. The FDA knows a little but they are not permitted to tell. With something that affects life and death, the lack of transparency is astonishing and disturbing.

Now however we have something new to worry about in the limited supplies of Doxil that are available. In early November 2011 the European Medicines Agency's Committee for Medicinal Products for Human Use (CHMP) as part a joint inspection with UK, French and US regulators found "significant" contamination and other quality control problems at Ben Venue. Ben Venue "voluntarily" pulled the plug on itself. EMA recommended the recall of three drugs: Velcade, (Millennium and J&J) used for multiple myeloma, Vidaza (Celgene) used to treat anemia, leukemia and bone marrow disease (MDS) and Busilvex(aka Busulfex), used to treat a form of leukemia. The Hong Kong regulatory agency has joined in and expanded this recall. The FDA has NOT issued any recall.

EMA did not recall Doxil (Caelyx) because Ben Venue was the sole source for manufacturing the drug. However, it did recommend that the drug not be used for new patients, an irony given that the drug is essentially not available except for the limited doses that have been distributed. It also asked that doctors monitor patients for side effects like the deadly sepsis. Janssen was asked to circulate a letter to that effect to physicians but nothing has yet been posted on the Doxil website as of today, December 4, 2011. Here is what EMA said about Doxil (Caelyx):

For Caelyx, for which Ben Venue is the only manufacturing source, the CHMP considers the product to be essential only for patients already on treatment. It recommended that supplies should be available to maintain these patients on Caelyx but no new patients should be started on treatment with Caelyx until further notice. The CHMP advised that healthcare professionals should monitor treated patients intensively and immediately notify any relevant safety concerns that could be evidence of a quality assurance problem (particularly any cases of sepsis or suspected sepsis, such as acute pyrexia). The marketing authorisation holder, Janssen, has been asked to circulate a communication to healthcare professionals to reinforce these messages, requesting them to enhance monitoring and report any suspected adverse reaction or complaints that could be evidence of a quality assurance problem with the aseptic filling process. The CHMP will review the situation on a continuous basis.

For those of you who may still be taking Doxil, please check with your doctor about this warning. I suspect Janssen has not yet issued the letter even though EMA posted its findings almost two weeks ago. Unfortunately, given that emergency injectable antibiotics are also in shortage (13% of all shortages; see page 14 of this FDA report), it may not be worth the risk to take any Doxil now.

Originally posted on my other blog on December 4, 2011

Shortages of Drugs for Life Threatening Illnesses- An Overview

2011-11-19T16:46:00.001-08:00

UPDATED NOVEMBER 21, 2011

If you have followed the news and this blog, you know that there is a nationwide shortage of Doxil, a chemotherapy drug used to treat recurrent ovarian cancer, multiple myeloma and Kaposi’s sarcoma. News of the shortage first surfaced in July 2011 with new supplies expected in mid or late August, 2011. However, that prediction from the drug distributor turned out to be wholly inaccurate.

The drug is owned and distributed by Janssen Products, LP, a Johnson & Johnson company. Ben Venue Laboratories in Bedford, Ohio, the manufacturing arm of Bedford Laboratories and a unit of Boehringer Ingelheim GmbH of Germany, manufactures Doxil under contract to Janssen.

To explain the Doxil shortage, Ben Venue’s representative said that the company is facing "manufacturing capacity constraints" that have held up some products, and it is working diligently to prioritize and expedite manufacturing for current orders." However, Ben Venue Labs has decided to exit the Doxil business and other contract manufacturing to focus more on its business as Bedford Laboratories, a producer of generic injectables, and avoid all the problems that have caused bans from Canada and Europe of Ben Venue products. In the meantime, as Bedford Laboratories, the company has discontinued manufacture of mainline cancer drugs cisplatin and carboplatin and has significant shortages of Taxol. It appears to focus on commonly prescribed and presumably more profitable drugs such as those that treat migraine (generic Imitrix), indigestion (generic Zantac) and high blood pressure (generic Inderol).

With Ben Venue moving on to greener pastures, who will J&J find to manufacture Doxil and how hard will they try? Doxil reportedly represents less than 1% of Johnson & Johnson revenues.

As of today, there is no indication that the Doxil shortage will end any time soon. Janssen's president, a cancer survivor himself, sympathizes with those affected by having treatment plans interrupted or changed. However, in 2010, Janssen chose to rely on one manufacturer to produce Doxil, even though in the past, it had a second manufacturer abroad, Schering Plough. Doxil also has no generic competition because it effectively still has patent protection in the US until 2014. Doxil's patent expired in 2009 but J&J/Janssen still has the monopoly under the Orphan Drug Act as a reward for acquiring the company which produced a drug for a rare condition-one affecting fewer than 200,000 people.

In fact, on November 19, 2011, the Wall Street Journal reported that Ben Venue had stopped manufacturing drugs, including Doxil, altogether:

A troubled contract manufacturer, whose problems caused a shortage of Johnson & Johnson's (JNJ) cancer drug Doxil, has suspended manufacturing and distribution of products from its Ohio plant, saying routine preventive maintenance and other required actions were overdue. . . . Before its decision to halt production, Ben Venue had strained to balance factory remediation efforts with the need to continue supplying critical drugs, a newly released document shows.

See also here.

Janssen knew or should have known that Ben Venue had a history of manufacturing and quality control problems that would lead shortages and thus should not have been the sole manufacturer in the world of Doxil (called Caelyx in other parts of the world.) The FDA recently issued an unusually lengthy 483 report showing complaints about quality control since 2006 and 48 GMP (good manufacturing practices) violations. Public records of these FDA inspections and an earlier 483 report have been available since at least 2007. The European Medicines Agency also inspected Ben Venue and found quality control issues.

Not only is Doxil currently unavailable for most people who need it, the mainstay chemotherapies for ovarian cancer--cisplatin, carboplatin and taxol (placitaxel) are also in shortage. Cervical cancer and endometrial cancer are also disproportionately affected by these shortages. The common drugs used to treat cervical cancer, cisplatin, carboplatin, taxol (placitaxel) and fluorouracil, 5-FU, are all in shortage. Fluorouracil is also used to treat colorectal cancer and pancreatic cancer, which are obviously gender neutral cancers. And do not forget that Taxol is one of the mainstay treatments for breast cancer which is diagnosed in about 230,000 women per year in the U.S. with 2.5 million survivors. Endometrial cancer’s mainline chemo treatments are carboplatin, Taxol, doxorubicin and cisplatin, all of which are in short supply. Unfortunately, another cancer whose treatment is seriously affected is testicular cancer, for which 3 of 4 mainline chemo treatments (Bleomycin, Etoposide, and Cisplatin) have shortages. The following generic drug companies have mainline chemo shortages:

Taxol-- APP, Bedford, Hospira, Sandoz and Teva
Carboplatin-- APP, Bedford, Sandoz and Teva.
Cisplatin-- APP, Bedford, BMS and Teva.
Fluorouracil--APP, Teva, and Mylan
Bleomycin—APP, Bristol-Myers, Hospira and Teva (Bedford ceased manufacture)
Etoposide—APP, Bedford, Teva

Drug shortages, which according to the American Society of Health-System Pharmacists (ASHP) as of today exceed 200 drugs, (the FDA, who receives voluntary reports of shortages from drug companies, lists over 170) do not just affect people with relatively rare cancers or just people with cancer in general. The shortages include anesthetics, IV propofol used for intubation when someone cannot breathe, injectable antibiotics such as streptomycin,and norepinephrine and labetalol which regulate emergency cases of low and high blood pressure respectively. So these shortages may affect any of us and most likely in an emergency setting when you rely on hospitals and medical personnel having the medications necessary to keep you alive. And as shortages of one drug occur, other substitute drugs have increased demand, which then can lead to their shortages. No relief seems to be in sight. As NPR says, drug shortages are "the new normal".

A hearing was held on Friday September 23, 2011 in the House Energy and Commerce subcommittee on Health about the drug shortages.

FACTS FROM THE HEARING (as reported by Ovarian Cancer National Alliance):
• 54 percent of shortages are due to quality control issues
• 21 percent of shortages are due to delays in manufacturing or capacity issues
• 99 percent of hospitals report experiencing one or more drug shortage in the first six months of 2011
• 66 percent of hospitals report an oncology drug shortage
• In an April 2011 survey, more than 90 percent of anesthesiologists reported at least one drug shortage at the time of the survey and 98 percent reported a shortage at some time during the past year
• The shortages have cost hospitals $415 million in drug and labor costs

Money, Money, Money, Money . . . Money- More on the Doxil Shortage

2011-11-14T21:49:00.000-08:00

"Some people got to have it."

J&J company, Janssen Products, LP, posted an update last week(on 11/9/11) about the Doxil shortage. Unfortunately there is no indication that the shortage will end any time soon. Janssen's president, as a cancer survivor himself, sympathizes with those of us affected by having our treatment plans interrupted or, in my case, changed. But, we are s#!t out of luck because Janssen chose to rely on one manufacturer to produce a drug which has no generic competition because it effectively still has patent protection in the US until 2014. (Doxil's patent expired in 2009 but J&J/Janssen still has the monopoly under the Orphan Drug Act as a reward for acquiring the company which produced a drug for a rare condition-one affecting fewer than 200,000 people).

According to Janssen, this shortage has nothing to do with profit. Here is Janssen's explanation:

Supply Management and Reason for the Current Shortage of DOXIL^®

It is our practice to provide early warning of any shortage in supply of our medications so that prescribers, pharmacists and authorized distributors have as much lead time as possible to plan and source alternative treatment options where it may be appropriate. We alerted the U.S. Food and Drug Administration (FDA) and the healthcare community in June when we first determined that DOXIL^® might be in short supply for a few weeks. When we learned that the shortage would be longer term, we quickly alerted healthcare professionals and directed them not to start new patients on DOXIL^®. We have since continued to provide regular updates on the status of DOXIL^® supply.

The current short supply situation has been caused, in part, by unplanned downtime due to equipment failures at our independent specialty manufacturer. Some have challenged us, asking if our DOXIL^® shortage is financially motivated in any way. We appreciate this opportunity to tell you that this is absolutely not the case.

We are working closely with this supplier to restore uninterrupted access to DOXIL^® as quickly as possible. Until that time, we expect product supply to remain intermittent over the next several months as this manufacturer works to return production capacity to the levels necessary to supply all patients in need. DOXIL^® is complex to manufacture -- consisting of multi-step processes that require significant production times – which may add to the time it takes to bring us back up to full supply. (Italics added)

I still do not understand how equipment failures would lead to such a long time to restore production. I am inclined to believe Ben Venue's original explanation to the WSJ in July 2011 that Ben Venue had made decisions to "prioritize" drug production in response to a loss of production capacity and other production problems at their facility. To me, this statement makes clear that Ben Venue decided to focus on manufacturing other more profitable drugs than Doxil when production problems arose, which is supported by Ben Venue's decision at about the same time to get out of the Doxil manufacturing business. Given that Janssen had only this one manufacturer and no contingency plan when production stopped, I can only conclude that Janssen did not consider this drug sufficiently important (i.e. profitable), notwithstanding their protestations to the contrary and their orphan drug exclusivity status.

A recent article in the New England Journal of Medicine (The Shortage of Essential Chemotherapy Drugs in the United States,Mandy L. Gatesman, Pharm.D., and Thomas J. Smith, M.D.N Engl J Med 2011; 365:1653-1655 November 3, 2011) also agrees that the drug shortages are first and foremost caused by profit motive:

The main cause of drug shortages is economic. If manufacturers don't make enough profit, they won't make generic drugs. There have been some manufacturing problems, but manufacturers are not required to report any reasons or timetable for discontinuing a product. Contamination and shortages of raw materials probably account for less than 10% of the shortages.

Janssen still has not told us much of anything about why the Doxil shortage happened and when it will be fixed. To me, that is completely irresponsible and lamentable. However, until the health care system in this country is not solely governed by the profit motive, we can expect no other result.

Halloween 3.0

2011-11-02T15:00:00.000-07:00

My son and grandson are visiting for a while and staying with us. I love having them here even with the chaos that inevitably comes from adding more people, including an active child, to the household. My 6 year old grandson joined me last night to watch an episode of Star Trek TNG which I forced my children to watch when they were growing up during the initial broadcasts. And my grandson dressed up as a Teenage Mutant Ninja Turtle for Halloween just like his Dad did over 20 years ago. Ironically I have the old costume from my son's childhood but it got put into deep storage so my grandson got his choice of a new costume.

This year on Halloween I did not participate in handing out candy or going trick or treating with the grand-boy. Instead I stayed in my room reading and playing on the computer while others took over these Halloween tasks that I have done for so many years. My son carved a pumpkin which I saw in the kitchen before I went to "hide" in the bedroom. It looked fantastic and much better than anything I ever did when he was a child. I could not find our regular tea candles so, after grousing a while, I gave him a more expensive aromatherapy candle to put in the pumpkin to go outside. A few minutes later I saw the results of his artistry as the candle lit through the etchings on the pumpkin. However, I did not see it in person. Instead I saw a picture of it on Facebook. In addition to clicking "like" I yelled down to my son that the pumpkin looked great! Are we a modern family or what?

Paradise Pumpkin 10/31/11

I BELIEVE . . .

2011-10-26T16:00:00.000-07:00

In case you are not a friend of mine on Facebook I wanted to share with you some special writing I did today. My niece posted the following:

My response, which gives you some idea about my mood, was the following:

I believe in black.
I believe laughing at people is the best medicine.
I believe in telling people to kiss off a lot.
I believe in pointing out when everything is going wrong.
I believe the prettiest girls are the happiest girls and I believe that tomorrow is another day only
for Scarlett O"Hara.
I believe in martinis, not miracles

Red Herring re Drug Shortages

2011-10-20T12:47:00.000-07:00

NBC Nightly News ran a program on October 17, 2011 about how the current drug shortage problem is being exacerbated by profiteers who are buying up available supplies of drugs in shortage and reselling to hospitals at exorbitant prices. There is no question that this price gauging is deplorable. But it is a red herring in my opinion. It shifts the focus away from the real issue which is why are there such extensive drug shortages in the first place. Why has our drug supply system fallen apart such that seriously ill patients cannot get the drugs they need to survive?

Visit msnbc.com for breaking news, world news, and news about the economy

The program started with the right message i.e. the current drug shortages are harming children with leukemia as well as other cancer patients. The program properly focused on the fact that shortages will roll back years of progress in survival rates and children's lives (as well as others) will be lost. But NBC Nightly News, like the Congressional response thus far, took the left turn toward focusing on those who would profit from these drug shortages by price gauging rather than keeping the focus on the pharmaceutical companies who have caused the drug shortages in the name of maximizing their profit.

Price gouging is a much easier target for a solution than the capitalist functioning of the pharmaceutical industry. Only a few diehard conservative economists will justify price gouging but it is a harder sell to talk about regulating an industry to require them to make less profitable drugs solely to save people's lives. It is a particularly hard sell in Washington D.C. where the pharmaceutical industry trade association PHRMA and individual drug companies are spending record amounts in lobbying this year.

So let's not be distracted by the predators who will feed on the horrible situation of the drug shortage. Let's keep our eye on the real problem and try to make the drug companies accountable for the drug shortages that are only getting worse.

In the Pink

2011-10-16T17:40:00.000-07:00

Two issues have been bothering me lately. One concerns the development of an "us vs them" mentality in the ovarian cancer community, a mentality that I also share even though I feel bad that I do. I have seen on ovarian cancer bulletin boards and websites a lot of posts of fury and frustration about how much airplay breast cancer gets when ovarian cancer is largely ignored. People are upset, for example, that stores had started putting up the pink breast cancer paraphernalia in September, which was Ovarian Cancer Awareness Month. Now that it is October, Breast Cancer Awareness month, you cannot go anywhere without tripping over pink stuff. It is infuriating given that ovarian cancer is a fairly deadly cancer for American women given its frequency- about 15,000 women in the U.S. will die this year of ovarian cancer out of a population of approximately of approximately 177,000 women who have been diagnosed with the disease. In contrast, breast cancer kills more American women in absolute numbers per year, about 40,000. However, there are currently 2.5 million breast cancer survivors-- about 14 times as many as ovarian cancer survivors, whereas the number of breast cancer deaths is less than 3 times the number of ovarian cancer deaths.

Cupcakes for the Cure (after you finish your KFC)

When I am not also feeling annoyed about the prevalence of pink and the absence of teal, I want to urge everyone to focus on the fact that once no one paid any attention to breast cancer either. It has taken over 25 years to build up this much awareness for the disease, largely due to the actions of the Susan G. Komen Foundation ("Komen"). Perhaps teal needs to take a page from the Komen playbook.

Which brings me to the second issue that has been bothering me. Are the methods worth the outcome of increased attention to the disease and money for research and treatment? Natasha Singer in today's (October 16, 2011) New York Times reports that Komen has raised billions for breast cancer awareness, treatment and research. Komen started with the Race for the Cure in 1983 but under founder Nancy Brinker's (Susan Komen's sister) salesmanship, Komen moved into commercial endorsements. Although pink was associated with Komen from the beginning, the ubiquitous pink loop ribbon came out in 1992 as part of an Estee Lauder campaign and taken from another cancer advocate, Charlotte Haley, who first used a peach loop ribbon to solicit breast cancer donations. And then the corporate sponsorships cascaded and grew until we find all sorts of interesting items in the pink genre-- such as KFCs Buckets for the Cure, Yoplait yogurt (with all its potentially breast cancer causing sugar), Egglands Best eggs (whose "humane" practices have been questioned), cooking appliances (I myself bought the "pink" Kitchenaid mixer because it was on sale for less than the other mixers) and even potentially carcinogenic perfumes.

It troubles me that breast cancer awareness has become big business although it is hard to argue with success. For my teal sisters, I think we need to look carefully at the Komen model for raising money and awareness but we need to do something rather than feel sorry for ourselves that pink always seems to trump teal.

Want Not, Waste Not

2011-10-08T21:45:00.000-07:00

Before I go in for infusions I do a pass through the house to toss out rotting food so I don't have to deal with it when I am feeling lousy from the chemo. When I did this pass yesterday, I was feeling bad about the fact that I tend to have eyes bigger than my stomach when I shop and inevitably buy food that winds up in the trash. For example, last weekend I bought some tofu spring rolls and heirloom tomatoes that I did not eat this week, and likely now are fodder for the trash can. This week I mostly ate a bean tortilla casserole that I forced myself to make with black beans I cooked last week which otherwise would be destined for the trash.

It seems to me that worrying about overshopping is a luxury that those who do not have enough to eat would envy. However, NPR has posted a story to make us who waste feel even guiltier. Citing a research study, NPR reported we Americans waste about 55 million tons of food a year, or 40 percent of the food supply. This represents about a 50% increase in food waste from 1974 when big Farma was beginning to overtake American agriculture to give us lower food prices. As food prices went down, increased food waste also accounted for 25% more water consumption, 300 million more barrels of oil a year and substantial increases in methane and CO2. Another scientist cited in the NPR story concluded that the average family gave up 1800 pounds of emissions from food wasted at home. Luckily for some of us who mostly eschew animal products, 35% of the wasted food is chicken, fish and fruit while only 15% is nuts and legumes. But, not so lucky for the environment because, as I have said elsewhere, food production and processing is the main source (80%) of greenhouse emissions.

All of this data leads me to two conclusions. First, we need to cut down on production of animal products in the first instance given how much American food production is polluting the earth. I do my part in trying to eat virtually no animal products, although I am far from perfect in my occasionally use of dairy products and eggs.

Second, and more difficult for me, is getting a much better sense of how much food to buy and what. I cannot afford the time or energy to go to the store every day. So I stock up on the weekends. Inevitably I buy too many perishable fruits and vegetables. Worse, for 6 months I belonged to a CSA and rarely ate any of the fruits and vegetables I got in my biweekly box. I hate to cut off a customer for the South Central LA CSA, but I am more disturbed by all the rotting vegetables I throw away. I do not see myself able to donate scraps to farms or zoos, neither of which are nearby. Instead I need to figure out some system of what and how much to buy so I can reduce my waste foot print. But with food so colorful, available and inexpensive it is hard to say no when the stomach insists it wants that this week. Self discipline and not wanting would seem to be the best answer I have for reducing household food waste.

Shortages are Getting Worse-- the "New Normal"

2011-10-06T07:31:00.000-07:00

In an odd way, I was pleased to see a report on NPR on October 3, 2011 that the drug shortages are worse than initially reported. I have been shouting "the sky is falling" since August, very concerned about the shortages affecting drugs like carboplatin, cisplatin and taxol, which are mainline treatments for several cancers (including taxol for the ubiquitous Pinks who should join our bandwagon during Breast Cancer Month). The NPR report emphasized that there appears to be only a month's supply left of taxol at Mass General, a major U.S. hospital.

The NPR report also shone a light on the fact that these shortages, now up to 213 drugs, do not just affect people with relatively rare cancers or just people with cancer in general. The shortages include anesthetics, IV propofol used for intubation when someone cannot breathe, injectable antibiotics such as streptomycin,and norepinephrine and labetalol which regulate emergency cases of low and high blood pressure respectively. So these shortages may affect any of you (or me if I develop other health problems) and most likely in an emergency setting when you rely on hospitals and medical personnel having the medications necessary to keep you alive.

And more important, as I pointed out in The Real Death Panels?, the shortages are leading to rationing--by the drug manufacturers like Ben Venue who are using an allocation system of only providing Doxil to a limited subset of those who already were in treatment with it, and by the hospitals or infusion centers who are deciding who more critically needs the drug. (see my blog post Drug Shortages, Ethics and the Scramble to Stay Alive) For example, as the 10/3/11 NPR report states, hospitals are taking from some patients to give to others.

One reason that Kevin Zakhar [a fifteen year old boy] hasn't been able to get the calcium solution he needs is that hospitals have been reserving it for patients who need it even more desperately than he does.

Kathy Gura, a pharmacist at Children's Hospital in Boston, points to one of those patients, a tiny infant born only 23 weeks past conception, as premature as a baby can be and still survive. And he wouldn't have survived without the same kind of IV feeding that Kevin Zahkar gets.

Gura and caregivers at other hospitals say they have had to divert scarce electrolytes from other children and adults to save the lives of fragile preemies. Gura calls it "robbing Peter to pay Paul."

See also here for a discussion of one breast cancer fighter's experience with drug rationing.

And as shortages of one drug occur, other substitute drugs have increased demand which then can lead to their shortages. No relief seems to be in sight. As NPR says, drug shortages are "the new normal". My reaction continues to be: how can that be possible in the United States which is known for innovation in science and medication development? How can it be possible in any civilized society-- to leave your most vulnerable citizens without needed medications?

Picture This!

2011-10-03T09:54:00.000-07:00

The other evening I got together with a dear friend of mine. While we were eating dinner, she pulled out a small album of photographs from her trip to Machu Picchu and surroundings areas. As I flipped through the album she gave me background information and vignettes about aspects of the trip which the photos captured.

Old School Photo Album

The last time I showed anyone my pictures from a trip in person, I did it on an iPad. The person looking at them went through the pictures quickly and did not pause enough for me to give too much background or too many vignettes. But then, vacation photos have always been something that either you love or hate/tolerate.

Remember sitting through slide shows of pictures of someone's vacation while they narrated each event? Those slide shows are fodder for many comedians' routines. Anyone who has been through such a slide show will recall the dread of going to someone's house where the slide projector and a screen were set up in the living room. The last "slide show" I saw briefly was on a DVD of old family photos from my husband's family. My children found it fascinating. I found something else to do.

These days I typically look at people's pictures online. I will peruse online photos of something within a day or so of it happening if the poster gets the photos up right away. In that way, we are on virtual holiday with the poster. I also see a lot more photos than if I had to meet the people in person and look at a physical photo album. And I get to choose what I want to see rather than having it foist upon me a la old school vacation slide show.

The downside, of course, is the lack of information and context about the pictures I see online. Some people are good about explaining the pictures. Others do a photo dump and leave you to guess what you are looking at. And even with the written explanations, nuance and detail just tend to not be there in postings online.

On balance, I think I prefer looking at photos online. I can take the amount of time I want to look without boring others if I linger or offending if I go fast. I can zoom in if I want on aspects of the photo that intrigue. But, as I realized the other day when looking at my friend's photo album, there is clearly something lost in the online experience--the real time human sharing of experiences rather than virtual sharing. What you get with online sharing is mostly quantity and less quality of experience. Some would mourn the loss of the quality of the in person photo sharing experience. Perhaps I do a little.

More Publicity But No Progress

2011-09-28T18:59:00.001-07:00

A new friend of mine who also has ovarian cancer sent me a link to the following video of coverage earlier this week on CBS News of the drug shortage. In it, the woman featured in the CBS News spot I posted earlier is revisited. This time she has somehow been able to get Doxil, but only one dose and she reportedly does not know from month to month whether she will get any more.

Janssen updated its notice on September 23 about availability of Doxil, explaining that they expected to release limited amounts within the next six weeks but reading between the lines correctly this shortage will likely continue for several years. Janssen reiterates that the supplies will not be enough for those on the waiting list. The Wall Street Journal reported on September 26, 2011 that 2500 people are still on the Doxil waiting list. I am one of those 2500.

The WSJ article also confirmed that Doxil is not a big seller for Johnson & Johnson (Janssen's parent), representing less than 1% of annual revenue. It was heartening to see the emphasis in the CBS News report on the issue of profit in the decision making creating these shortages. I understand from Ovarian Cancer National Alliance (OCNA) that GAO will issue a "definitive report" this fall about the causes. Somehow I do not think profit will be their explanation.

Here are some other interesting facts reported by OCNA:

FACTS FROM THE HEARINGS
Of the 4 billion prescriptions filled in the United States in 2010, 3 billion were generic drugs
54 percent of shortages are due to quality control issues
21 percent of shortages are due to delays in manufacturing or capacity issues
The integrity or safety of drugs sold on the gray market cannot be assured
The average mark up of drugs on the gray market is 650 percent; one-quarter of drugs sold on the gray market are marked up 2000 percent
99 percent of hospitals report experiencing one or more drug shortage in the first six months of 2011
66 percent of hospitals report an oncology drug shortage
In an April 2011 survey, more than 90 percent of anesthesiologists reported at least one drug shortage at the time of the survey and 98 percent reported a shortage at some time during the past year
The shortages have cost hospitals $415 million in drug and labor costs

By the way, do you think CBS News read my post The Real Death Panels? I find it very suspicious that they chose to show Nexium in their report after I featured it in my blog post. ROFLMAO.

More about Drug Shortages- Get Out Those Scarves and Teal Arm Bands

2011-09-25T10:33:00.000-07:00

What if the government and private donations pumped money into the development of drugs to treat a deadly cancer but suddenly when distribution of the drugs became unprofitable the companies making them stopped production. What happens to the war on cancer then? Should we just accept that in a capitalist economy, profits determine who lives and who dies?

I have written in other posts that it appears to me that the current chemo shortages are disproportionately affecting ovarian cancer, which is primarily an older woman's disease. I was please to find this American Cancer Society article that confirms my position. Unfortunately the article skews the discussion a bit about what has caused the shortages by also quoting a large pharmaceutal distributor (McKesson) saying essentially it's all the FDA's fault. The spokesperson claims that FDA's increased scrutiny on manufacturing processes and quality control have made certain drugs too low in profits to sustain production of those drugs. The article further states,"McKesson’s Chief Medical Officer Dr. Roy Beveridge, MD, says there is no economic incentive for manufacturers to make or distribute low-priced generic drugs, and that unless the baseline system changes, shortages are going to continue."

J&J Headquarters designed by IM Pei

Ben Venue Labs, the manufacturer of Doxil, a critical treatment for recurrent ovarian cancer, for a subsidiary of Johnson & Johnson, claims that the problem is not one profit. An 9/22/11 article in courier-journal.com by Laura Ungar states:

Jason Kurtz, spokesman for the Ohio-based third-party maker, Ben Venue Laboratories, would only say “we’re facing capacity constraints” with a drug that is complex to make. He wouldn’t specify what type of constraints, but said examples of such problems include unplanned downtime because of machinery breakdowns and capital-improvement projects that limit manufacturing capacity.

However, Ben Venue Labs wants out of the Doxil business (and other contract manufacturing) to focus more on its business as Bedford Labs, a producer of generic injectables, and avoid all the problems that have caused bans from Canada and Europe of Ben Venue products. Like the WSJ said, it is all about manufacturing priorities. In the meantime, as Bedford Labs, the company has discontinued cisplatin and carboplatin and has significant shortages in production of Taxol. It appears to focus on commonly needed and presumably more profitable drugs such as those that treat migraine (generic Imitrix), indigestion (generic Zantac) and high blood pressure (generic Inderol).

With Ben Venue moving on to greener pastures, who will J&J find to manufacture Doxil and how hard will they try? Doxil reportedly represents less than 1% of Johnson & Johnson revenues. A few of my ovarian cancer sisters on inspire.com bulletin board noted that J&J makes a lot of money marketing to women, and in particular in women's products. Here's one list of products that J& J sells. Perhaps J&J needs to be reminded that they need to focus on Doxil as well, and quickly.

In addition, there are all the generic drug companies that have discontinued or have serious shortage in chemo drugs ovarian cancer patients need. For Taxol, they are APP, Bedford, Hospira, Sandoz and Teva. For carboplatin, they are APP, Bedford, Sandoz and Teva. For cisplatin, they are APP, Bedford and Teva. And with Bedford, now out of the ovarian chemo business for the most part, more of the market power will consolidate in the handful of generic companies left, who will continue to make "allocation decisions" of their manufacturing capacity based on profit.

What can we do? Big Pharma would have us believe that the causes are all very complicated--increased reliance on outsourced ingredients, Medicare price controls, increased demand from all those pesky cancer patients, complicated manufacturing processes and lack of inspection capacity from the FDA. But we all know that it boils down to making sure that Big Pharma makes maximum profit, even when lives are at stake. This is unacceptable in a civilized society.

In my previous posts, I have encouraged people to write to Congress. A hearing was held on Friday September 23, 2011 in the House Energy and Commerce subcommittee on Health but the human voice of the affected cancer patient was sorely missing. We can continue to try to get our government to take some action in this area which they have been loath to regulate thus far. Or we can take our message to the streets and protest at the offices of the companies who will not manufacture the drugs we need. We could show up at J&J corporate offices (and the generic companies too) wearing scarves and teal arm bands, with our message that we are still here, we are still fighting and they have an obligation to get us the drugs that will keep us alive. Who's up for a road trip to New Brunswick, New Jersey?

You've Come a Long Way, Baby!

2011-09-24T19:07:00.000-07:00

When I first read the LA Times August 26, 2011 op-ed piece by Eve Weinbaum and Rachel Roth, "Beyond Suffrage: How far have women come since?", my reaction was "a long, long way" (even without our own cigarette now,baby). My first reading of the article was to pick apart all of the criticisms of what women have not accomplished and focus on how much has changed in the last 90 years. But, in watching the Gloria Steinem HBO documentary again this evening, I was struck by her quoting Susan B Anthony, "Our job is not to make young women grateful. It is make them ungrateful so they keep going."

I needed to reconcile these two views. While I agree that making women "ungrateful" and ever aware of their second class status is motivating, I also believe that ignorance of where we have been and what we have accomplished can zap motivation for more change. Thus I found myself scrutinizing the Weinbaum/Roth article with both a look to what we have accomplished and what still needs to be done.

The op-ed outlined a four point plan by feminist Crystal Eastman in 1920 for women's freedom now that they had won the vote. Weinbaum and Roth summarize the four points as follows (for the modern crowd):

[E]conomic independence for women (including freedom to choose an occupation and equal pay), gender equality at home (raising "feminist sons" to share the responsibilities of family life), "voluntary motherhood" (reproductive freedom) and "motherhood endowment," or financial support for child-rearing and homemaking.

Weinbaum and Roth then argue that women have not achieved these four things in the past 90+ years. For example, women on average still only make $0.77 for every dollar men make (and even less if you are a woman of color). But, I wanted to remind everyone, women did not make anything working 100 years ago and as recently as 40 years ago only made half of what men made, on average. Women are able to work in almost every occupation and have equal if not greater access to university educations, as a result of the feminist movements so far. But I know that women still are not well represented in the highest ranks of power either in government or in the boardroom.

To me, the problem is that our society does not really accommodate the fact that women are the ones to give birth rather than men. All of the inequalities of today stem from that fact (and are magnified by inequalities of income). Women in the United States, on the whole, do not have reasonable access to childcare either right after birth or as work continues. They have reproductive freedom that was not available 90 years ago--contraception and abortion, but when a woman chooses to have a child, the support is quite limited. Two states (California and NJ) provide paid family leave insurance to workers covered by state disability insurance in the form of payment (at 55-65 percent (or less) of regular salary. A handful of other states, such as Rhode Island, New York, and Hawaii, offer temporary disability insurance to mothers to recover from the "disability" of childbirth based on a doctor's certification. For example, when I had my daughter in the late 80s, which was before California enacted its paid family leave insurance, I got this TDI for eight weeks, which was the maximum time any doctor would give unless there were unusual complications. Most states, however, do not have such TDI or insurance so that they are only bound by Family and Medical Leave Act, which allows the employee to return after family leave to a job but does not pay for that leave and only applies in organizations with 50 or more employees. Only about half of United States employees are eligible for FMLA.

Private sector generally does not voluntarily provide paid family leave. According to one 2011 survey by the Society for Human Resource Management, only 16% of private sector companies in manufacturing and service sectors offer paid maternity or paternity leave. Private sector provision of child care is no better. A 2007 U.S Department of Labor study reports that only 15 percent of private sector workers had access to employer-provided childcare assistance, including funds, on-site or off-site childcare, and resource and referral services. Even worse, however, is federal government employees who must use sick leave and other leave for childbirth and new infant care. A recent federal report recommended against providing 6 weeks of paid leave, claiming the current system of cobbling other leaves together for childbirth and new infant care was "generous"

Reportedly, Fortune 100 companies do better, with about 75% of them offering paid maternity leave, which raises an interesting question of 25% of the 10 best companies for which to work do not offer paid maternity leave. However, Fortune 100 companies in 2011, the 100 "Best Companies to Work For", with roughly 1.5 Million employees, only represent less than 1% of the labor force. And childcare in this rarefied stratosphere is not all that readily available or inexpensive. About 25% of the Fortune 100 companies offer onsite childcare for which you still have to pay $400-$700 per month.

Unfortunately, the lack of support for maternity leave and child care in this country is not just financial, although lower and middle income families keenly feel the lack of financial support . For those who can afford childcare, there is still the lingering sentiment that children need to be raised by their parents, not child care providers. The corollary to that belief is that women should do the brunt of raising of children because men make more money, or are not naturally good with children or some other rigamarole. If there are still those who think that the best child rearing environment involves a stay at home parent, let us free men from the stereotypes that they are not able to do it.

As a matter of practicality in this economy, both men and women have to work for families to survive financially. Given that reality, our government needs to put behind its stereotypes of the past and take responsibility, like most countries, to pay for a reasonable length maternity and new infant care leave. Until then, women in the United States will not experience critical equality.

CBS News Report on Doxil Misses Some of the Point

2011-09-19T14:51:00.000-07:00

Gray Kitty wondering about Gray market drugs

Finally, there is more nationwide focus by CBS News on the nationwide shortage of Doxil and the other shortages in over 200 drugs. Unfortunately, after starting out strong on the Doxil problem, this show shifts its focus to the gray market for drug shortages, which is likely a side effect of the shortages rather than a cause. The CBS piece also suggests that demand for these chemo drugs is up when we know from looking at the ASHP schedules that in fact supply is down. For example, the ASHP report says "Bedford discontinued carboplatin in May, 2011 to concentrate on the manufacturing of other products." The manufacturers have other drugs to make that are more profitable so cancer patients who need generics like carboplatin, cisplatin, Taxol, fluorouracil, 5-FU and doxorubicin. While I deplore those in the gray market profiting from the shortages, let's not lose sight that they did not cause the shortages in the first instance. Let's keep our focus on the drug companies, who made manufacturing decisions to cut supplies, while demand for certain chemotherapies was going up.

Bad News, Good News

2011-09-17T15:49:00.000-07:00

Even sweet doggies get IVs

Yesterday my gyn/onc and I chatted a bit before I had my third infusion in this course of treatment for recurrent ovarian cancer. He confirmed what I expected--that Cedars Sinai had not received any Doxil and did not know when they would. He said that their pharmacist was dealing with multiple vendors now in an effort to secure some but no success. However, he thought some of the smaller treatment clinics may be getting some small amounts of Doxil. Oddly enough that made me feel good given that many times I have heard from sisters that they could not get either Taxol or platinum drugs at the smaller infusion centers.

So it looks like I will continue my treatment with only carboplatin. The good news is that it is really knocking down my CA 125 numbers. After two infusions I have dropped from 100 to 15, which is almost in my baseline remission zone, which is 8-12. The doctor is optimistic that I will only need one more infusion after the one I got yesterday.

My only nagging concern is that, as Dr. Li confirmed, studies show that average time in remission and overall survival is better with a combination of Doxil and carboplatin than with Doxil alone. And the longer you are in remission, the more likely you will respond to carboplatin in the future (i.e. be carboplatin sensitive). So there may be some problem in the future for me because I missed Doxil this time but only time will tell whether I am in the average group or as Dr. Li says at the good end of the bell curve with a lengthy remission ahead of me.

Which leads me to a discussion of studies and numbers. While I was looking for studies about the effects of Doxil in combination with carboplatin on remisssion and survival, I came across a few studies that had not seen in the past. The first study sent my heart soaring because it said the average five year survival rate for my type and stage (initially IIIa) of ovarian cancer is 45%. (Another report said 41% which also made me feel ok). I had read in the past survival rates in the 25-30% for my type and stage of cancer. Hopefully these new stats mean treatments are getting better and hopefully the drug shortages will not cause the stats to decline again.

On the other hand, contrary to what my doctor had told me, my recurrence may mean my survival rate has dropped. If I am reading these stage criteria correctly, the fact that my cancer has spread to my lymph nodes should mean I am now IIIc. Staging is done during surgery but it would seem to me that now we know it has spread to the lymph nodes (which the doctor explained to my worried husband that it had nowhere else to go) should the stage not be IIIc? Another question for the doctor. If I am IIIc, my survival rate just dropped to either 35% or 23%. Ooops!

My doctor tells me not to look at the stats on the internet. They are old and they are averages for a population. They do not predict to the individual, i.e me. Someone has to be out at the good end of the bell curve. I know that the statistics do not tell me how long I will live. I once taught college statistics and have a PhD in psychology which fully covered study design (so don't get me going on some of the medical studies I have cited here). But it is hard not to feel like I have a five year expiration label on my forehead. No one knows for sure how much time one has. In the meantime, we need to keep going to make sure that ovarian cancer is recognized as the serious problem it is and that drug shortages are remedied.

I Have a New Blog Site for Cancer Posts!

2011-09-16T11:42:00.000-07:00

Please visit my new blog site where I will be posting only about cancer issues. http://helpkeepasisteralive.blogspot.com/

So far I have only republished posts from this blog that concerned cancer. New posts will be forthcoming!

Awareness is Good; Treatment is Essential

2011-09-11T20:23:00.000-07:00

President Obama proclaimed that September is Ovarian Cancer Awareness Month. He acknowledged that ovarian cancer is still one of our deadliest diseases saying:

Ovarian cancer continues to have one of the highest mortality rates of any cancer, and it is a leading cause of cancer deaths among women in the United States. This month, we remember the mothers, sisters, and daughters we have lost to ovarian cancer, and we extend our support to those living with this disease. We also reaffirm our commitment to raising awareness about ovarian cancer, and to advancing our screening and treatment capabilities for the thousands of American women who will be diagnosed this year.

For those of us living (and hopefully not dying) with ovarian cancer, the lack of recognition for this disease is all too palpable and manifests itself in subtle ways. For example, the current drug shortages seem to affect ovarian cancer disproportionately. Not only is Doxil, a key treatment for recurrence of ovarian cancer, currently not available for most women who need it, the mainstay chemotherapies for ovarian cancer--cisplatin, carboplatin and taxol (placitaxel) are also in shortage. See also the FDA report on shortages here. Some of these drugs are also used to treat breast cancer, also a woman's disease.

I cannot emphasize how important these three mainstay drugs are for ovarian cancer. They pushed me into a year long remission after I was treated with them for five months in early 2010. I am only getting carboplatin now to treat a recurrence and it seems to be working so far given that my CA125 numbers have dropped significantly. I would not be exaggerating to say that I would likely be dead if those drugs were not available to me in 2010. It is amazing to me that shortages of such critical drugs are not being addressed at the same time the President is calling for "advancing . . . treatment capabilities" for ovarian cancer. Yes, we need research for new drugs but we also need access to the drugs that work now to put ovarian cancer into remission.

There have been several good press reports about the drug shortages but unfortunately everyone of them focused on men with cancer rather than the impact of these shortages on women's cancers. Gardiner Harris' New York Times article was the best of the bunch by discussing both an ovarian cancer patient who could not get Doxil and a breast cancer patient concerned about the Taxol shortage. However, the person who was shown in the picture accompanying the article was a man with colorectal cancer. To the Point interviewed Gardiner Harris, a representative of the generic drug trade association and Senator Klobucher but included as the "cancer patient" experiencing problems with shortages a man with cancer in remission! And the PBS News Hour coverage of the drug shortage also featured a 55 year old man with acute myeloid leukemia who luckily was in remission despite the shortage of the drug used to treat his type of cancer.

Is it a coincidence that the drug shortage story is told in the press by chronicling its effects on men? My own view is that the story is more compelling when it affects men than when it is shown to be disproportionally affecting women's cancers--particularly cancer affecting mostly older women who are beyond child bearing age. The men in these stories are all professionals whose careers are interrupted. The women are shown as crying about the situation. It is bad enough that we women have to suffer these shortages but to also be shortchanged by mainstream media in what appears to be not so subtle sexism is beyond comprehension.

The public needs to be made more aware that the drug shortages exist and affect women's cancers in a significant way. One suggestion I have is to contact the White House to make them aware during this month of ovarian cancer awareness that treatments for ovarian cancer are in critical shortage. You can write to the White House here with the message that while awareness of ovarian cancer is good, it is essential that these drug shortages end so that women with ovarian cancer can get the critical chemotherapy drugs used for mainline treatment.

ADDENDUM (9/14/11): I have just learned after some research that cervical cancer is also disproportionately affected by these shortages. The common drugs used to treat cervical cancer are cisplatin, carboplatin, taxol (placitaxel) and fluorouracil, 5-FU which are all in shortage. Fluorouracil is also used to treat colorectal cancer and pancreatic cancer, which are obviously gender neutral cancers. And do not forget that Taxol is one of the mainstay treatments for breast cancer which is diagnosed in about 230,000 women per year in the U.S. with 2.5 million survivors.

ADDENDUM 2 (9/15/11) Endometrial cancer is also disproportionately affected by the shortages because its mainline chemo treatments are carboplatin, Taxol, doxorubicin and cisplatin, all of which are in short supply. Unfortunately, another cancer whose treatment is seriously affected is testicular cancer, for which 3 of 4 mainline chemo treatments (Bleomycin, Etoposide, and Cisplatin) have shortages. Prostate cancer, on the other hand, (the most common men's cancer) is typically not treated by chemo and when it is, fortunately for those patients, the chemos used (e.g. docetaxel) do not seem to be in shortage. Here are links to contact Congress about pending legislation re the drug shortages.
http://www.opencongress.org/bill/112-h2245/text
http://www.opencongress.org/bill/112-s296/show

Sedona on the Rocks

2011-09-09T21:08:00.000-07:00

We have been to Sedona many times in the past ten years. Last week, over Labor Day weekend, was the first time we went in the summer. And it was so hot! 110 degrees or so every day we were there. As a result, my plans to do a tour and some hiking were dashed. Instead we drove around in an air conditioned car and got out in the heat for short periods of time to take pictures.

On route 179 on the way into Sedona from Interstate 17, there is a visitor center for the Red Rock region, which is part of the National Park system. We stopped to take some pictures, pick up a Red Rock pass and otherwise look around (i.e. shop for trinkets for grandchildren and me). This year, I remembered my annual N.P. pass which allows me to get the Red Rock pass for free. I was looking for it in my purse to show the woman at the desk and she asked me if I had the Senior Pass. I laughed and said, no, I hoped I did not look like I was 62 already. Then, when I asked her for the map with the rocks she said that was the "Disneyland" map and I really should take the hiking trail map instead. Apparently being in an air-conditioned building all day made this woman, who was significantly older than I am, delusional about what is appropriate behavior in 110 degree weather. I took my "Disneyland" map and left to take photos of the rocks, like any good Mickey Mouse tourist.

Three of the rocks shown below are spiritual vortices in Sedona, and reportedly have special energy. They are Bell Rock, Cathedral Rock and Kachina Woman. The fourth vortex, Airport Mesa, is not really a rock and thus not as photogenic as these other places.

These rocks are named based on what they resemble. I have followed local conventions as much as possible although sometimes Thunder Mountain is also called Capital Butte, Two Sisters is also known as Twin Nuns and Coffee Pot Rock, from another angle, is called Eagle Rock. The red color of the rock comes from a mixture of ferrous oxide with sandstone.

I also include a picture of the Chapel of the Holy Cross which is not a rock per se but is viewed in the same light and even deemed by some to be a vortex. I must agree that it has a special aura when you go inside.

Kachina Woman (Boynton Canyon)

Two Sisters

From left- Chimney Rock, Thunder Mountain, Coffee Pot Rock

Courthouse Butte

Coffee Pot Rock

Madonna and Child

Bell Rock

Cathedral Rock (from Schnebly Hill Road

Chapel of the Holy Cross

Eggs Benedictine- a Matter of Worship

2011-09-04T12:40:00.000-07:00

It is a fact. On vacations, we overeat and eat things we typically do not eat. As I try to segue into a fully vegan diet, I am constantly tempted, particularly on vacation by delicious egg dishes. My favorite, of course, is eggs benedict, which I now eat without the meat (ham, bacon etc). It is chockfull of buttery and eggy goodness from the poached eggs to the lovely hollandaise sauce. Three times on this trip I have resisted the siren call of the eggs benedict. First, at Red Rock Cafe where I vaguely remember thinking the sauce was not worth it, I decided against the lovely dish. Second, I passed at Josephine's in Flagstaff, much to my regret as my husband let me taste his. The sauce at Josephine's is superb with just the right amount of lemon for my palate. Third, this morning I skipped them at Yavapai at Enchantment resort and after tasting the sauce remembered why. It is a bit spicy for my taste although the husband loved it!

It is hard to find acceptable eggs benedict these days, which is probably good for me if I am in fact giving it up. In Los Angeles, there were a few places that made eggs benedict just right but I am afraid those places do not exist in the incarnation when the eggs benedict were king. We used to go to the Sandcastle in Malibu/Paradise Cove for Sunday brunch and get an excellent eggs benedict. Now the place is the Beach Cafe and somehow neither the eggs benedict or the atmosphere are the same. Another place I loved for the dish was Cafe Rodeo in Beverly Hills during the late 80s and early 90s. I think the restaurant is still there but did not even see regular eggs benedict on the menu. Recently I tried the Farm in Beverly Hills for eggs benedict. They put it on a biscuit unless you ask for an english muffin. Again, not as good as the best I remember.

About eight years ago, my husband, daughter and I took a trip up the California coast. We started at the Sandcastle and decided, as only our family would, that we would go on an eggs benedict tour up the coast. I do not think we stopped at the Biltmore in Santa Barbara (now the Four Seasons) which also had decent eggs benedict but continued north to Cambria. There unfortunately we could not find the dish but instead found wonderful croissants in a French patisserie. Next we moved on to Monterey where we found excellent eggs benedict in an unassuming restaurant on one of the main streets. In San Francisco, we ventured over the Golden Gate Bridge to a hotel sitting on top of the hill in Sausalito overlooking the bay. Hands down, that place had the best eggs benedict we ever ate. Unfortunately, the hotel is long gone, now replaced by a luxury drug rehabilation residential facility, where I suspect they do not serve eggs benedict (although you never know).

The only place where I have been recently that served exquisite eggs benedict was Dean Street Townhouse in London. The egg was farm fresh with a bright reddish orange yolk, almost unobtainable here in the states unless you keep your own chickens. And the hollandaise sauce was divine. Even the english muffin was cooked appropriately--crispy and not soggy or chewy. Ah, the memories. Luckily I do not go to London very often.

So if I keep my promise to myself to eliminate dairy and eggs after this course of chemo treatment ends, eggs benedict will be a thing of the past for me. I will remember my days of worshipping the dish fondly as I move onto other foods that reportedly will keep me healthy. Salut my old friend. Maybe I will eat you once again.

ADDENDUM: I tried a taste of eggs Benedict at ABC Bakery this morning in Napa. Pretty good sauce (with a little kick so not for purists) and delicious homemade English muffins.

THE REAL DEATH PANELS?

2011-08-30T20:09:00.000-07:00

Nexium everywhere but no capacity for Doxil

Critics of health care reform warned the government would set up "death panels" if the law was enacted. That hasn't happened, but such panels do exist, thanks to the actions of Big Pharma. Today pharmaceutical companies are choosing who will live and die when they decide not to manufacture drugs needed by cancer patients - like me - who are at risk of premature death.

There is a nationwide shortage of Doxil, a chemotherapy drug used to treat recurrent ovarian cancer, among other cancers. I learned about the shortage from my oncologist in July when he said that the best treatment for me was Doxil in combination with carboplatinum for my now recurrent ovarian cancer, but I would have to start without Doxil. New supplies were not expected until mid or late August.

The drug is distributed by Janssen Products, LP, a Johnson & Johnson company, and manufactured by Ben Venue Laboratories in Bedford, Ohio, a unit of Boehringer Ingelheim GmbH of Germany. Ben Venue’s representative explained that the company is facing "manufacturing capacity constraints" that have held up some products, and it is working diligently to prioritize and expedite manufacturing for current orders." (WSJ 7/21/11) I wonder if the priorities are set because of the lower financial return Doxil brings or the fact that it is a woman's disease that Doxil mostly treats.

I learned from an online board that women around the country were scrambling to places remote from their regular treatment centers to get the precious Doxil before it runs out. One woman said a small supply was available in Texas; another thought some could be had in Boston. It turns out that by early August, none was available in the United States. One person has gone to Paris to finish her Doxil treatment.

Shockingly, Doxil is only one of many drugs in shortage in the United States. Three other mainline chemotherapies for ovarian cancer, carboplatinum, cis-platin and taxol, as well as chemotherapy drugs for breast and colorectal cancer, are in short supply. I learned from a new friend online that her clinic in Los Angeles has run out of taxol. Luckily, I get my infusions at Cedars Sinai Medical Center, which still
has a supply of these three drugs even though it does not have Doxil.

On August 18, 2011, Janssen issued its latest update on the Doxil shortage. It announced that it had implemented its “new allocation process for a modest and limited supply of DOXIL®” and apparently all available Doxil has been distributed to certain patients whose physicians certified in writing that the patients were already on Doxil. There is now a waiting list that will be fulfilled as new supply eventually becomes available. However, Janssen cautioned, “As supply will remain intermittent in the coming months, Janssen Products, LP continues to recommend that no new patients be started on DOXIL®.”

So, the original announcement that Doxil would be available again by late August proved to be inaccurate. Doxil is available again only for special limited cases, which unfortunately do not include me because I have not yet started treatment with Doxil.

According to the American Society of Health System Pharmacists, drug shortages currently affect about 200 medications in the United States, including antibiotics. The FDA reports record shortages for 2010 and projects more record shortages for 2011. But the FDA has no power to require drug manufacturers to explain why there are shortages and effectively must beg the manufacturers to keep it informed.

The only real reason for these shortages is the economics for Big Pharma., which makes more money from new drugs, antidepressants and potency pills than generic chemotherapy drugs. Why make drugs for which you can only charge $3.00 per dose when you can force doctors because of shortages to prescribe new medications that cost $10,000 per dose.?

This all means I could go for an indeterminate time not getting the drug that my oncologist says best increases my odds for remission. I am starting to feel the need to scramble myself. For this grandmother,
the “allocation system” of who gets Doxil (and possibly the other drugs with shortages used to treat ovarian cancer) has made the drug companies the real death panels.

Senator Klobucher introduced S. 296, Preserving Access to Life-Saving Medications Act, which would require manufacturers to report shortages and reasons for the shortages to the FDA. A similar bill, HR 2245, has been introduced in the House. Both bills are still in committee.

While I support this legislation, it is unfortunately merely a band-aid over a gaping wound. Drug companies need to become more accountable for their profit driven decisions about what drugs to produce. My fellow cancer warriors and I cannot fight the good fight if the drugs aren't even available.

Life in the Fast Lane (of the Internet Highway)

2011-08-25T20:29:00.000-07:00

My niece, who is now in her late 20s, was a precocious toddler, in my opinion. She loved the movie The Secret of NIMH and at age 2 was perfectly capable of putting a Betamax copy of the movie in the player and watching it over and over (and over). Earlier this summer, I watched my 2 year old granddaughter use the remote control to try to turn on "Yo Gabba Gabba!" on their knobless Bravia television. Later she watched a music video of Numa Numa Yei on an iPhone while her auntie was combing her hair.

According to one survey, between roughly one fifth and one third of two year olds (depending on whether the moms are Gen X or GenY) today use smartphones, internet and digital cameras. Of course, the survey was done of moms who themselves were high users of internet, social media and smartphones. Indeed with the advent of these technologies, life travels in the fast lane from very early ages.

According to an AP article by Dinesh Ramde, we older folk (the baby boomers) clearly decry the speed at which things are changing but apparently even 30 somethings think that things are moving too fast. Is the fast lane becoming even faster?

Every year since 1988, Beloit College has published the Mindset List which provides a list what they call "the cultural touchstones that shape the lives of students entering college". From this years list:

There have nearly always been at least two women on the Supreme Court, and women have always commanded U.S. Navy ships.

“Don’t touch that dial!”….what dial?

Amazon has never been just a river in South America.

They’ve always gone to school with Mohammed and Jesus.

The Communist Party has never been the official political party in Russia.

Music has always been available via free downloads.

They’re the first generation to grow up hearing about the dangerous overuse of antibiotics.

They’ve often broken up with their significant others via texting, Facebook, or MySpace.

Their parents sort of remember Woolworths as this store that used to be downtown. (emphasis added)

They won’t go near a retailer that lacks a website.

“PC” has come to mean Personal Computer, not Political Correctness.

Copyright© 2011 Beloit College

For my borderline-Gen X niece, these are some examples from the Mindset List for her cohort:

The Kennedy tragedy was a plane crash, not an assassination.

They have always bought telephones, rather than rent them from AT&T.

There have always been ATM machines.

Three Mile Island is ancient history, and nuclear accidents happen in other countries.

Women sailors have always been stationed on U.S. Navy ships

They have never used a bottle of "White Out."

I suppose one of the really big changes between 18 year olds (Gen Z) and those near or in their 30s (Gen X) is the prevalence of and dependence on smartphones. Also, who needs an ATM these days? Everyone pays with debit cards. And my niece's crowd used Myspace, not Facebook, which is now the domain of older people as much as teenagers.

Is everything accelerating? Will newborns in a few years reach out for whatever replaces smartphones? All I know is that I hope I am around to see and I hope that I can keep up, even if Gen X can't!

Old Madrid by Bus

2011-08-20T18:28:00.000-07:00

When I arrived in Madrid from London on July 14, 2011, it was already afternoon. I had decided that, given my limited time in Madrid, I needed to get an overview of the city so I headed out to take a tour bus, Bus turistico Madrid. After consulting with the concierge at my hotel, I went to the Starbucks in the Palace Hotel building in the Plaza de Canovas del Castillo, with it famous Neptune Fountain, grabbed a sandwich and coffee and hopped on the Route 1 (Historic Madrid) bus, which stopped in front of the Starbucks.

Our first stop was Museo del Prado. I took a few pictures, knowing that I would be going there for an extended visit later. In fact, since the Prado was right across the street from the hotel, I did walk over there after I finished the bus trip. But I digress from the charms of the bus trip.

The first photogenic site that I can now identify in the pictures I took from the bus (which have the charm of being cut off because of the perspective) is Puerto de Alcala. The gate is in the Plaza de la Independence, near the entrance to the famous Parque del Buen Retiro, which I only saw in the distance even though it was very close to my hotel. I hope I will make it back there some day.

Next up was the Iglesia de San Manuel y San Benito on  Calle de Alcala, reportedly the longest street in Madrid. The church was built in the early 20th century and is an example of neo-Byzantine movement. (Interestingly, the Basilica of the National Shrine of the Immaculate Conception near Catholic University in Washington DC is also an example of this type of architecture style.).

The bus then went through Salamanca district, which the bus tour narrative described as one of the tonier areas of Madrid. Salamanca was the first expansion area of Madrid in the mid 19th century and if I recall correctly the streets were modeled on ones in Paris. We spent our time on Calle Valazquez as the photos below will show.

We turned on Calle Goya, which is supposedly one of the wealthiest streets in Madrid, and headed to the Plaza de Colon, still in Salamanca.The plaza is named after Christopher Columbus, (Colon en espanol) and a statue of the same sits in the middle of plaza. The National Library, founded in 1712, also is on the Plaza de Colon.

Our next major site of interest was the Plaza de Cibeles, the one site I remember on my way in from the airport that the taxi-driver identified. (The taxi driver did not speak English and no hablo espanol or maybe un poquito as I told him which of course led us to try to converse anyway. ) The plaza sports the   Cibeles Palace (Madrid City Hall), the Bank of Spain and the Metropolis Building and the famous fountain finished in 1782. It is more or less the beginning of the Chueca district.

We then took the Gran Via, a major street in central Madrid built in the early part of the 20th century, and turned left where shortly we passed the Parque de la Montana, location of the Templo de Debod (an ancient Egyptian temple) , and wound up driving for sometime by the fabulous royal palace, Palacio Real, and the nearby Teatro Real and Plaza de Oriente. (Los Austrias distrist)

We continued on Calle Balien, got our first look at the Gothic Revival style Catedral Almudena, and shortly thereafter some views of Madrid from the viaduct. As we started on Gran Via de San Francisco, now firmly in La Latina district, we got a view of another beautiful church, San Francisco el Grande, in the neoclassic style. We then came to the Puerta de Toledo, a 19th century gate, started by Joseph Bonaparte and finished by Fernando VII. We returned up Gran Via San Francisco/ Calle Balien and turned on Calle Mayor. After passing Iglesia Catedral Castrense (Military cathedral) a Baroque church built in late 17th Century, we passed (a bit of a whirlwind unfortunately) the well known Plaza de la Villa  and Plaza Mayor which were bustling with street life as the tour books say.

Our last major site on the tour for me was Puerta del Sol area, which disappointed me a bit. Somehow I missed the elegance of the plaza containing the Puerta and instead found the surrounding neighborhood seedy, commercial and cheap looking. It was one place I did not desire to return, although I understand the Puerta is well known place for celebrated New Year's.

All in all, Madrid on the bus provided an interesting taste of places to which I must return (ever Sol).

Plaza de Canovas del Castillo. Neptune Fountain.

Prado Museum

Puerta de Alcala

Iglesia de san Manuel y san Benito on Calle de Alcala

Salamanca Calle Valazquez

Plaza de Colon
Monument to Christopher Columbus
with National Library in background

Madrid's Town Hall (formerly Palacio de Telecomunicaciones) in Plaza de Cibeles

Bank of Spain Plaza de Cibeles

Plaza de Cibeles- Bank of Spain left
Metropolis Building right

Metropolis Building

Gran Via

Parque de la Montana Templo de Debod

Palacio Real

Palacio Real and Plaza de Oriente

Teatro Real

View of Madrid fromViaduct de Bailen

Catedral Altamuda

San Francisco el Grande

Puerta de Toledo

Iglesia Catedral Castrense

Plaza de la Villa

Plaza de la Villa-
Torre de la Lujanes on the left behind the lamp
Casa de Cisneros straight ahead

Plaza Mayor

Old Post Office Puerta del Sol

Near Puerta del Sol

The Fad of Being Vegan?

2011-08-20T09:39:00.000-07:00

After I finished my first round of chemo last year, I thought about becoming vegetarian as a way to get more plant products into my body to be healthier. I took the leap after reading Jonathan Safran Foer's book Eating Animals, which convinced me that factory farming and fishing are the critical cause of environmental damage to our planet as well as a key player in abuses of migrant workers. Foer argued that going to sustainable local farms for animal products was not good enough because there are really no remaining local slaughterhouses, leaving you to be part of the process of the abusive, environment damaging Big Farma anyway. And animal byproducts, like eggs and milk are almost impossible to find except through Big Farma. As a result Foer became a vegan--eating no animal products or byproducts (including fish who are particularly devastated by current fishing methods or fish farming methods).

I did not think, however, that I could give up eggs and dairy. I do not want to drink soy milk, given the debate about the effects of soy on cancer. One of my friends with breast cancer says her oncologist told her last year to stay away from soy given the alleged effects of estrogen. So she drinks almond milk, which I must say makes me shudder at the thought. I walked out of a cancer survival cooking class I took several years ago (ironically before I found out I had cancer) when they wanted us to try different types of nut milk. I hate flavored coffees and the thought of putting nut milk in coffee (or in any food other than maybe a brownie mix) disgusts me. As for eggs, I do not eat them that much anyway but they are one of the few things I can stomach when I am doing chemo.

However, it is hard to find sustainable dairy products and eggs. The eggs you buy at Whole Foods or at the farmer's market are factory farmed. The closest place I could find to get pastured eggs (eggs grown on a small farm where chickens eat their intended diet and really roam free rather than being enclosed in some manner) is about 15 miles away. I recently also found out that one of the organic milks I have been buying is factory farmed.

Moreover, I fret about the processed foods that seem to make their way into vegan diets. I am not talking about potato chips like the Los Angeles Times article recently crowed to show that veganism is not necessarily healthful. I am talking about soy isolate protein, aka textured soy protein or TVP, as featured in some recipes by superstar chef Tal Ronnen on the new Ellen Degeneres vegan blogsite. The health benefits of TVP are questionable to say the least. I personally like to stay away from it. I also am skeptical of vegan cheese like Daiya which contains "pea protein" but I have not really looked into that issue much yet and on a quick look it appears to be less problematic.

Which brings me to the title of this post. All of a sudden it seems that the news is covering a number of famous people embracing veganism. Bill Clinton, for example, this past week talked about his vegan diet. There is the new Ellen site as referenced above. Tal Ronnen is getting a lot of press for introducing Vegan dishes at Steve Wynn's request (Wynn is vegan) to Wynn's resorts in Las Vegas.

And vegan restaurants seem to be popping up all around me. In Culver City near the studio, Native Foods has taken off, serving vegan comfort food. Yesterday I went to the 3rd Street Promenade area to go to a vegan restaurant named Real Foods Daily (RFD) and was surprised to see a proliferation of vegan cafes. Santa Monica is still filled with wealthy"progressive" chic people vying for space among the ubiquitous homeless people (some of which were getting a bit more aggressive than I remembered) and now the toney are flocking to vegan restaurants. Indeed you have to have money; my enchiladas meal with a drink at RFD cost $25. (However, if you want to cook at home see Eat Vegan on $4 a Day.

So, as Malcolm Gladwell would say, is there a tipping point toward being vegetarian and vegan? Have I decided to change my lifestyle at the same time many other yuppies of my generation have? It gives me pause but in the long run, I do not care. I am happy with my decision to embrace this type of eating and hope to be able to sustain it.

You say To-lay-do and I say To-lee-do

2011-08-12T20:09:00.000-07:00

Since I am a diligent (read "demented") worker and, for reasons I do not really understand, I decided I could only tack three days onto to my July London business trip for personal travel, I had to make some stark choices about where to go this year. I had never been to Spain and started to look at options of where I could spend those three days. Notwithstanding a warning that I would be there at the hottest time of the year, I decided to go to Madrid and take a day trip to Toledo to get a feel for an older Spanish town. Toledo is about 40 minutes away on the Renfe (AVE) high speed train from Atocha Station in Madrid which itself was about a 10 minute walk from my hotel, the Westin Palace. The trains run fairly regularly so I planned to go to Toledo early on the second day of stay in Madrid, hoping to avoid the midday heat.

Unfortunately, one more change in time zone kept me up late and caused me to sleep until almost 9:30 a.m. I saw there was a train at 10:20 so I raced out of the hotel, grabbed a coffee and sandwich and headed off to Atocha Station. The Atocha Station, sadly now known as the scene of the 2004 terrorist attack, is a beauty. The interior is a parksize greenhouse where people can sit on benches and enjoy the almost constant water spray on what seem to be tropical plants. I arrived at 10:00 a.m. and made my way to ticket sales area where there were three lines open and about a dozen people in each line. Normally I figured that would be no problem but Spaniards seem to take a long time when they are purchasing tickets-- apparently discussing every nuance of price and what you are getting for your Euros. (I noticed the same thing in the Prado when someone was renting one of those audio tour devices). So every transaction took much longer than it should have taken and I arrived at the desk 10 minutes after the train had left. (It was sold out anyway). The next train was two hours later so I purchased round trip tickets, never wanting to stand on line again.

With two hours to kill, I headed to the Reina Sofia which was across the street from the Atocha. I will discuss my Madrid museum-o-mania in a separate posting. I made the train on time and sat across from a young Spanish man whose presumed girlfriend kept ringing his cell phone every two minutes. After a few bars of something like "You are a sex machine", he would hit the off button and two minutes later the process would start over again. Eventually he answered, saving us all from obsessive compulsive girlfriend behavior and a very bad ringtone song.

Once in Toledo, I hailed a taxi and was taken to Plaza de Zocodover, which my Lonely Planet tour guide book recommended as the starting place for a walking tour. I walked around the Plaza and took a picture of Arco de la Sangre but instead of heading through the old Arab wall gate down to the Alcazar (which supposedly had wonderful views of the Rio Tajo which surrounds Toledo) I wandered off in search of a vegetarian restaurant off the Plaza. Taking the first of many wrong turns of the day, I wound up on the Calle del Comercio, which is the main shopping street--not the place you want to visit at the beginning of your walking tour of a city when you are already lugging a heavy camera bag. I resisted the gorgeous authentic Talavera pottery (the Latin American version is named after the craft made in Talavera la Reina, outside of Toledo) and made my way to the Catedral de Toledo. I did not go inside unfortunately given the short amount of time and energy I had. And I still needed to eat lunch.

After wandering around back streets for a while, I found a restaurant named Palacios which was in my guide book and located on the map in an entirely different place than I thought I was. By now it was almost 2 p.m and I was hot and very hungry. Palacios served the best gazpacho I have ever had -- perfect for the hot dry weather of that region of Spain. I also ordered various tapas which wound up being too much food but delicious and suitably vegetarian.

When I left I headed toward the Jewish quarter of Toledo and got lost once again with everything closed up for siesta. Luckily I found myself on top of a hill above Monastery San Juan de los Reyes where I got the view of the Rio Tajo I missed earlier. Across from the Monastery there was a shop open where the proprietor was watching the Tour de France. I talked to him in my pidgen Spanish, took advantage of the cooler air for awhile (it must have been over 100 degrees F outside) and decided to buy from my new friend souvenirs, including a faux talavera bowl which was "signed" but was clearly too inexpensive to be authentic. At least it didn't say "Made in China". The proprietor gave me directions to the Sinagoga del Transito which was right down the calle. Unfortunately it was closed and I could not muster the energy to tour the El Greco museum next door. Instead, I called a cab and returned to the train station where I enjoyed the wonderful decor inside and then relaxed with an aranciata in the outdoor cafe while waiting to return to Madrid.

One last note. The trains in Spain have metal detectors like we have in airports and one poor tourist was not allowed to bring on the train Toledo swords she had bought in the store at the station. Why do they sell them there if you cannot take them on the train?

Inside Atocha Station

Plaza de Zocodover

Arco de la Sangre

On or near Calle del Comercio

Approaching Catedral de Toledo

Catedral de Toledo

Palacios Restaurante

Oh no! It's siesta time and I am lost

View of Monastery San Juan de los Reyes and Rio Tajo

Monastery San Juan de los Reyes and the store where I rested

I love these Arab influences in the buildings

Sinagogo del Transito

Interior Toledo Station

Waiting for the train and drinking aranciata

El tren

Drug Shortages Part 2- the Scramble Continues

2011-08-10T19:37:00.000-07:00

In my last post, I wrote about the nationwide shortage of Doxil, a drug used primarily to treat recurrent ovarian cancer. In turns out that not only is there a Doxil shortage. Three other mainline chemotherapies for ovarian cancer, carboplatin, cisplatin and taxol, are in short supply. I learned about the taxol shortage from a new friend on an ovarian cancer website. Her clinic, not too far from where I live, has run out of taxol. Luckily I get my infusions at a major medical center which still has a supply of these three drugs even though it does not have Doxil.

Doxil is available again for special cases, which unfortunately do not include me because I have not yet started treatment with Doxil.

Important Updates on DOXIL^® Shortage (8/5/2011)
We remain committed to restoring the availability of DOXIL^® (doxorubicin HCl liposome injection). A modest supply is now available through the DOXIL^® C.A.R.E.S. (Creating Awareness & Reinforcing Education Support) Physician Access Program.
To help ensure that patients currently on DOXIL^® receive the amount of DOXIL^® necessary to continue their course of therapy, we have set up the DOXIL^® C.A.R.E.S. Physician Access Program, a physician allocation process to obtain newly available DOXIL^® supply.
As DOXIL^® supply will remain intermittently available in the coming months, first priority will be given to patients currently on DOXIL^®. We continue to recommend that no new patients start therapy with DOXIL^® until adequate supply becomes available. (emphasis added)

So I could go for an indeterminate time not getting the drug that my oncologist says best increases my odds for a decent remission. I am starting to feel the need to scramble myself.

According to the American Society of Health System Pharmacists, drug shortages currently affect about 200 medications in the United States, including antibiotics. The FDA reports record shortages for 2010 and projects more record shortages for 2011. But the FDA has no power to require drug manufacturers to explain why there are shortages and effectively must beg the manufacturers to keep it informed.

The only real reason for these shortages is the economics for Big Pharma, which makes more money from new drugs, antidepressants and potency pills than generic chemotherapy drugs. Dr. Ezekiel Emmanuel in the New York Times (August 7, 2011) explains:

Only the older but curative cancer drugs — drugs that can cost as little as $3 per dose — have become unavailable. Most of these drugs have no substitutes, but, crazy as it seems, in some cases these shortages are forcing doctors to use brand-name drugs at more than 100 times the cost. Only about 10 percent of the shortages can be attributed to a lack of raw materials and essential ingredients to manufacture the drugs. Most shortages appear instead to be the consequence of corporate decisions to cease production, or interruptions in production caused by money or quality problems, which manufacturers do not appear to be in a rush to fix.

Senators Schumer and Klobucher have introduced a bill, Preserving Access to Life-Saving Medications Act, which would require manufacturers to report shortages and reasons for the shortages to the FDA. A similar bill has been introduced in the House. See comparison of the two bills here. Hearings are planned for the fall and hopefully manufacturers will become more accountable for their profit driven decisions about what drugs to produce. I hope so. My fellow cancer warriors and I cannot fight the good fight if the drugs aren't even available.

Shortages, Ethics and the Scramble to Stay Alive

2011-07-23T07:50:00.000-07:00

There is a nationwide shortage of Doxil, a chemotherapy drug used to treat recurrent ovarian cancer among other cancers. My oncologist told me two days ago when he said that I would need to start Doxil in combination with carboplatin to treat my now recurrent cancer. New supplies are not expected until mid or late August. The drug is distributed by Johnson & Johnson and manufactured by Ben Venue Laboratories in Bedford, Ohio, a unit of Boehringer Ingelheim GmbH of Germany. A representative of the manufacturer explained that the company is facing "manufacturing capacity constraints" that have held up some products, and it is working diligently to prioritize and expedite manufacturing for current orders." (WSJ 7/21/11) The devil in me wonders if it is the priorities are set by the lower financial return Doxil brings or the fact that it is a woman's disease that Doxil mostly treats.

However, I also am grappling with an ethics issue. I have joined an ovarian cancer forum on the internet where it came to my attention in one discussion that women from around the country are scrambling to get to places remote from their regular treatment centers to get the precious Doxil before it runs out. One woman said a small supply was available in Texas; another thought some could be had in Boston. I must say that such behavior makes me very uncomfortable. Why should a scarce product be given to someone who shows up on a doorstep wanting it? One of the women insisted that she was doing well and needed to finish 6 cycles even though my own oncologist said that six cycles may not be necessary for everyone (particularly someone who is "doing well").

I suppose the "battle" against cancer is like every other battle-- get in there and slug it out to get what you need and want. I have a lot of fight in me but I find it unlikely that at this point I would fly 2000 miles to get a treatment that may not give you much more of an edge anyway. But maybe I am still too new to this chronic cancer treatment situation. The odds are that the rest of my life, whether it is a few years or many more, I will be going regularly for treatment. I wonder if the more you go through treatment, the more you are desperate to make sure you get it. If you don't, maybe the next recurrence will be your last because the cancer will have spread too far.

Is there a principled way to decide who gets the limited supplies of this cancer drug other than the slugfest for the last drops? All of us burdened with ovarian cancer need treatment to stay alive. Is it anymore principled for me to have access to top rate health care because I have excellent health insurance whereas someone else will not get the needed drug or treatment because insurance will not pay and it is otherwise unaffordable? Perhaps it is my diminished IQ due to learning of the recurrence of cancer, but I do not have any answers. I just know that it makes me uncomfortable.

Hetch Hetchy and the Environmental Cause

2011-07-15T15:45:00.000-07:00

On our fourth full day in Yosemite National Park we ventured out of the overpopulated Yosemite Valley to the other valley of Yosemite--Hetch Hetchy. That valley is not full of people but of water, thanks to the needs and wants of San Francisco after the 1906 earthquake and fire. In the late 19th century, James Phelan, a San Francisco politician, including for a while Mayor, decided that SF needed a new source of water in order to grow its population and stature as a major US economic force. He set his sights on Hetch Hetchy valley in Yosemite, which he thought would be an ideal water source if the Tuolomne River were dammed and the valley turned into a reservoir. Environmentalists, including the newly formed Sierra Club and the famous John Muir, fought this project for over 20 years until they lost their support in Washington after Wilson's election to the presidency and his appointment of another SF politician, Walter Fisher, as Secretary of the Interior, who supported building the dam. Federal law, the Raker Bill, was enacted in 1913 to create the reservoir for SF in Hetch Hetchy. Construction of the O'Shaughnessy Dam was completed in 1923 and Hetch Hetchy to this day remains flooded, notwithstanding efforts to have it restored.

The struggle between preserving the environment and exploitation by people of natural resources is one that continues to this day in many forms. The Hetch Hetchy debate concerned the tension between the desire for growth and the desire to preserve the beauty of nature. Today, the debates seem, to me at least, to concern a more serious tension for the desire to provide energy to insatiable demand of an overgrown world population and the need to keep the environment healthy so that our grandchildren and great grandchildren will not suffer more deleterious effects from pollution and global climate change. Although certain powers in SF in the early 20th century wanted more energy for that city, as even the New York Times recognized then, SF did not need the water/power supply that the Hetch Hetchy project would deliver. Other sources were available at the time which did not involve destroying part of a national park, but also did not supply as much as wanted by those who sought to push the growth of SF. Ironically, the city of SF has not grown much since the horrible 1906 earthquake and fire. The population then was about 400,000 and currently is about 800,000, a mere doubling in 105 years. Where the growth has occurred, however, is in the overall SF/ Bay Area, which increased almost twelvefold from a population of 600,000 in 1906 to about 7.15 million today. Hetch Hetchy supplies water to about 2 million people in SF/Bay Area.

I spend more time than I should worrying about the legacy of the decimation of resources for my children and grandchildren. Overfarming, overfishing, air pollution, water pollution seem to me to be serious environmental concerns. However, I need to remind myself that the early Sierra Club members and John Muir were perhaps prescient about unrestrained use of natural resources even if the long term impact of the choices pushed by James Phelan and his ilk were not as obvious at the time. By flooding Hetch Hetchy, Phelan got his wish of tremendous growth in the SF/Bay Area in line with belief that natural resources of the United States were endless and could supply huge growth. Now that we feel the pinch of that growth around the world with a world population projected to be 7 billion this year and continue to grow to over 10 billion by the end of the century, perhaps I need to give their position more credit. People should not have messed with "nature's . . . temples" (John Muir).

Hetch Hetchy today is remote and quite beautiful even with the water where the valley should be. However as you will see from the historic pictures (many by Herbert Gleason) that follow and my own pictures of it currently, Hetch Hetchy was indeed a rival to Yosemite Valley in grandeur and beauty before it was flooded.

View of Valley floor with Kolana Rock

View from O'Shaughnessy Dam today

Herbert W. Gleason photograph

View of Kolana Rock today

Wamapo Falls then

Wamapo Falls now

Hetch Hetchy Valley 1908 or before

Hetch Hetchy today

O'Shaughnessy Dam

Way Down Upon the Ahwahnee

2011-06-29T16:55:00.000-07:00

For many years I have dreamed of staying at the Ahwahnee Hotel at Yosemite. When MCA was my client and it owned Yosemite Park and Curry Company, the former concessionaire of the Ahwahnee, I was frequently told that it was difficult, nay impossible, to get a reservation at the Hotel unless you had pull and money. I had little of either at the time so I tucked the dream away for another day.

Last year, when we came to Yosemite in June 2010 after my chemotherapy ended, we wound up eating at the Ahwahnee Hotel for lunch a few times. At that point we hatched our plot to bring our entire family to Yosemite the following June for a wilderness vacation. I got onto the current concessionaire's, DNC Parks and Resorts at Yosemite, website, to discover that my husband and I could stay at the Ahwahnee for an exorbitant price that we could afford (sort of) if I got a bonus this year and I did not want to plan to have any money in the future!

One year later I am sitting here as I type this entry on the Ahwahnee grounds in a cottage completed in 1927. From the cottage and the hotel we enjoy fabulous views of Half Dome, Yosemite Falls, the Merced River and Glacier Point. Everything is wonderful -- except for the people. Yosemite Valley has record water flow this year which has yielded record crowds. Today, after raining last night and this morning, hordes of campers from Curry Village and other campsites have poured in the Ahwahnee for shelter and food. And the Merced flooded in Housekeeping Camp so people are displaced from their lodging. Where are they going? Apparently also to the Ahwahnee. The valet parking was 50 cars deep at lunchtime as we waited for friends to meet us at the Ahwahnee Bar.

It is crowded all over Yosemite Valley with traffic jams reminiscent of the 405 at home. The hybrid buses that you are encouraged to take to cut down on pollution in the park are crammed with people, some of whom have not showered for a while. It makes the buses of cities at rush hour seem desirable.

At breakfast the other day, the person at the next table loudly exhorted people at his table, whom he apparently had just met, to have a wonderful time in Yosemite, which is a "piece of heaven on earth". The man to whom he made this comment got angry and offended, replying that it was sacrilege to compare anything on earth to heaven. My thought was to wonder whether there would be as many crowds in heaven.

"Thousands of tired, nerve-shaken, over-civilized people are beginning to find out that going to the mountain is going home; that wildness is necessity; that mountain parks and reservations are useful not only as fountains of timber and irrigating rivers, but as fountains of life." John Muir

Today, John Muir, it would be tens of thousands, all piled in the small area of the Yosemite Valley. But even with the crowds, this place is magical and eye opening, both for its natural beauty and its history.

You can read about the history of the Ahwahnee here and here. The hotel opened in 1927 as a place of decorum for a certain type of traveler. One of the people working here told us this morning, as we sat in the Mural Room off the Grand Lounge, that the original application to work for the Curry Company at the Ahwahnee told people if they could not smile for ten hours straight, no need to apply. Another story I like about the Ahwahnee is the following report (whether it's true I do not know given that other parts of this source blog were challenged in the blog's comments):

Prior to the availability of condenser units, at the beginning of each winter, the hotel staff would go out to Mirror Lake (about 1.5 miles away) and cut 500 pound (225 kg) blocks of ice from the frozen lake. These blocks would be hauled back to the hotel and stored under straw and sawdust. When the refrigerators needed "refilling", the blocks were lifted by a winch and slid into these doorways situated above each chamber. Each of these doorways led to compartments big enough for ten 500-pound blocks of ice.

Ahwahnee Hotel in the past

Ahwahnee Hotel today

Grand Lobby is behind pillars

Another view of Ahwahnee

Cottage at Ahwahnee

One More For the Road About Santa Fe

2011-06-21T21:18:00.000-07:00

In pulling together the photos for yesterday's post, I came across a few more gems about Santa Fe that I want to share. As I mentioned in the first post of this series about Santa Fe we loved our stay at Hacienda Nicholas. Part of the Hacienda Nicholas family of properties is the spa Absolute Nirvana. I had two very wonderful massages there in a cottage room on the Madeleine Inn property. We had originally scheduled the two massages (one for each of us) for the night of our arrival but our travel was delayed so we missed the appointments. Given that there were basketball games on TV the other evenings and we wanted to go sightseeing during the day, my husband donated his massage to me so that I could have them two nights in a row. Both massages were expert and enjoyable, not really fully Thai massage but somewhat different from the Swedish massage I typically get. Here is a picture of the room where I had both massages--tastefully Thai, I believe.

Absolute Nirvana

On Monday, rain was forecast so I scheduled two massages at 10,000 Waves, in the hills just outside of Santa Fe proper. We had gone to 10,000 Waves our last visit to Santa Fe and decided it was worth a return visit to the Japanese style spa, which their website says "feels like a Japanese onsen" . I did not do a bath this time but was taken to a private room among the trees on the side of the hill where it felt as if I were having the massage outside. My masseuse was a bit chatty and very knowledgeable about alternative health therapies but the massage was not the best one I have had recently. My husband, on the other hand, raved that his massage was one of the best, if not the best one he had ever had.

10000 Waves

It did not rain, of course, on Monday so before we headed out to 10,000 Waves in the afternoon, we did an extensive shopping stop at Jackalope. Jackalope is a bit like Cost Plus/World Market meets outdoor bazaar. There is one in Los Angeles but I have only been to the one in Santa Fe which has all these wonderful Mexican and New Mexican items. I bought a few pieces of talavera style items, two of which broke on the trip home. (Fortunately, other talavera items bought there and elsewhere survived the trip. Memo to self, do not give badly wrapped breakable items to husband to carry). Every time I go to Jackalope, I wish I had a car or truck so that I could take home bigger items that I find there, like benches for the yard and furniture. I suppose I should go to the one in LA but I am afraid it will spoil the Santa Fe experience of this funky store.

Jackalope- the proprietor

Where's my truck? At Jackalope

The Way of Taos

2011-06-20T21:22:00.000-07:00

We have gone to Taos on every single trip we have made to Santa Fe. Who doesn't love the beauty of the Sangre de Cristo Mountains (even if the name leaves something to be desired. For my money, mountains should named after sweet things and not the blood of Christ)? This time, however, after a brief shopping excursion to the John Dunn Shops off the main square where there is a lovely independent bookstore and a good leather bag shop, we decided to head out to the Taos Pueblo which we had never visited.

View of Sangre de Cristo from Taos

First however we needed sustenance so we set off in search of lunch. Our first effort took us to a place recommended by the girl in the bookstore--Orlando's New Mexican Cafe. Unfortunately Orlando's was closed for a private graduation party so I pulled out the smartphone and clicked on Yelp. We found a nearby breakfast/lunch place called Gutiz which is described as Latin-French fusion and had an average 5 rating on Yelp. It was definitely a good find. I had the vegetarian tartine that was delicious and virtuous, although probably not low cal. The decor was sweet and we were seated by a blond young girl about 10 years old who I hope was a relative of the owner.

Gutiz

Interior of Gutiz

Taos Pueblo was a short drive from the restaurant and a long way from the "scene" of Taos. The tribal management charged a camera fee of $6 for each of us as well as $10 admission fee. As my husband said, it contributes to the upkeep of the Pueblo tribal community, which lives with tourists gaping and clicking at the homestead on a daily basis.

The Taos Pueblo is a World Heritage Site as the oldest continuously inhabited community in the United States, with evidence that the ancestors of the current inhabitants lived there 1000 years ago. The base of the pueblo buildings were built between 550-1000 years ago and the current multistory structures look much like they did 500 years ago. The Pueblo also contains a beautiful church (Roman Catholic but with the Native American twist- unfortunately no photos allowed of the inside) with a great view of the mountains from the church courtyard through the entry gate. Most of the buildings contained shops run by members of the tribe (called variously the Taos Pueblo people, the Tiwa or Tewa people, or the Red Willow people perhaps the latter name is related to the Red Willow creek which runs through the Pueblo. We bought a few of the crafts--in particular a clay sculpted storyteller, which was a grandmother telling children stories of the past. We also watched drummers and a wonderful dog swimming in the creek.

Artisan shop in Taos Pueblo

Taos Pueblo north

Red Willow Creek

Red Willow Creek with view of San Geronimo Church

Drummers of Taos Pueblo

Taos Pueblo south

San Geronimo Church

View from San Geronimo courtyard

Our last stop of the day in Taos was the Rio Grande Gorge Bridge, which we had visited previously but one of us had forgotten the last trip. I found the walk across the bridge to be as terrifying as the last time but the scenery is quite fascinating. The sky also filled up with white clouds that are perfect as a cloud template for photoshop, if you are into that sort of thing. I just like looking at the clouds in contrast to the deep blue sky over the Sangre de Cristo mountains.

Rio Grande Gorge

Rio Grande Gorge Bridge

Clouds over Sangre de Cristo Mountains

Santa Fe Revisited

2011-06-16T12:09:00.000-07:00

After a two year hiatus, we returned to Santa Fe in May for a four day weekend trip. This time we stayed in a B&B, Hacienda Nicholas, which an old friend recommended. The proprietress, Carolyn Lee, actually owns three/four properties--Hacienda Nicholas (+ casita), Madeleine Inn and Alexander's Inn, which are named after her three children. We stayed in the casita, which is a few blocks away from the Madeleine and the Hacienda, themselves across a cul de sac from each other on a small street off Palace Avenue near Paseo de Peralta. The casita was spacious, tastefully decorated in Southwesternalia and had the ever desirable king size bed. However, for us it was a bit awkward having to get from the bedroom upstairs in the middle of the night to the bathroom via metal spiral staircase. I recommend the casita only for those with younger bladders.

Breakfast at Hacienda Nicholas was out of this world. For example, they made a bluecorn pinon waffle that melted in your mouth. The other breakfasts were chili based but not too spicy for me, who generally does not like spicy. Although I must say that I find I am more tolerant of chilis and other New Mexican spices in Santa fe than I am when I try to recreate the food at home. Perhaps being in the high desert makes it taste better?

We did venture out of the B&B from time to time (even though the massages at Absolute Nirvana, located at the Madeleine, were lovely). In our room, there was helpful binder with itineraries to explore the Santa Fe area. Thanks to that, we took off for Bandelier Monument, about an hour from Santa Fe. On the way to Bandelier, we stopped first at Los Alamos to visit the site of the development of the atomic bombs.

After visiting Hiroshima in December, it seemed fitting to come full circle to the place where work was done on the atomic bombs dropped on Hiroshima and Nagasaki. The Manhattan Project was largely run out of Los Alamos although a significant amount of work on the gun-style fission bomb, Little Boy, which was dropped on Hiroshima, was done in Tennessee. The supply of uranium isotope (Uranium 235) used in the first bomb was limited and so research at Los Alamos focussed on building a bomb based on fission of plutonium. Robert J. Oppenheimer assembled a staff of preeminent scientists, including a friend's father, who traveled by train to Santa Fe and then were whisked away to this secret location near the mountains.

We wandered around the former site of the Los Alamos Ranch School, which provided offices and living space for many of the scientists, in addition to the now demolished quonset huts that filled the park across from the school site. Fuller Lodge, with its main auditorium where Manhattan Project scientists met to discuss weighty issues, is now used for events. A pianist was practicing for an event while we were there. We opted not to visit the memorial for the place where Big Man (dropped on Nagasaki) was assembled, having steeped ourselves enough in WW2 history for one day.

Baker House

Fuller Lodge

Auditorium in Fuller Lodge

Instead we headed to Bandelier in search of a much older history, that of the ancient pueblo people and their dwellings. We walked on the main loop trail, visiting the big Kiva, Tyuonyi and a few cliff dwellings and cave rooms (aka cavetes). Unfortunately, the altitude and dry air made it too hard for me to keep climbing to make it to the Long House. Perhaps on my next trip.

Big Kiva

Tyuonyi pueblo remmants- closeup

Bandelier cliff dwellings

Tyuonyi pueblo remmants- overview

Cave rooms

Next up-- our day trip to Taos, including the Taos Pueblo and the Rio Grande Gorge

So Long Santa Cruz

2011-06-11T10:21:00.000-07:00

Last weekend the young'un graduated with an AA from Cabrillo College (with high honors, ahem). As I have said elsewhere here, she is moving on to UC Berkeley to continue her studies toward a BA, most likely in legal studies. We went to Santa Cruz last weekend to enjoy the celebration of this accomplishment and to say goodbye to the lovely and quirky northern California beach city.

We returned to our favorite B&B in Capitola, the Inn at Depot Hill, which I also wrote about previously. This time we were finally able to get into our first choice room, Costa del Sol, which is located in the back of the main inn building. The room has a king size bed, which B&Bers know is not easy to come by. And the room has a lovely balcony with a fountain underneath so you get the sound of running water when you sit at the table on the balcony. Unfortunately for us, it rained a lot of the time we were there so we did not get to use the balcony to its full extent.

We made our way downtown several times as usual and ran the gauntlet of the street performers and homeless people while visiting favorite restaurants and the Bookshop Santa Cruz, a wonderful independent bookstore. Our young'un luckily never lived in the downtown area, thanks to momma bear's insistence. However, the area is lively even though a little seedy.

On Sunday we got a small break in the rain so we ventured out to a state park on the ocean called Natural Bridges. Unfortunately, due to budget cuts for the state parks in California, the facilities at the park were very run down but nature was still splendid. Natural Bridge is an arch in the ocean that takes one's breath away. (There is only one bridge so I am not sure why the name of the park has "bridges" as plural). Definitely a place to stop if you are driving up Highway 1 to San Francisco above Santa Cruz.

We also made it to the Santa Cruz Harbor for the first time. There is a wonderful restaurant, Crow's Nest, with views of the ocean and the lighthouse. The food was excellent too. The Harbor was the scene of impact of the Japanese tsunami in March 2011, Some boats were damaged but generally it was a fairly mild swell of water.

Santa Cruz Harbor and Lighthouse

Santa Cruz Harbor (scene of March 2011 tsunami damage)

It is hard to believe that two years ago I went to Santa Cruz several times during the summer of 2009 to find housing for the young'un and her beau, a task that was not easy but ultimately was accomplished. Now the graduates are off looking for housing in Berkeley. I will miss Santa Cruz but look forward to the new adventures in visiting Cal (da Bears!) and its environs.

The Soundtracks of Our Lives

2011-05-19T17:49:00.000-07:00

Music is everywhere! Sometimes thankfully and other times not so much. I find that one place where I do not want to listen to music, largely because I cannot control my environment, is in the doctor's office. For example, this morning I was having a carotid artery ultrasound. It is not a very intrusive test, particularly after being subjected to extensive infusions of chemotherapy etc. You lie on a table, somewhat awkwardly with your head a little lower than your back, and the technician runs her wand over the gel on both sides of your neck for about ten minutes. The worst side effect is a little dizziness when you get up. And the worst discomfort of the test (for me at least) is not being able to talk for about 10 minutes.

However, today I experienced an additional discomfort. The technician had on a radio station playing music that I found to be the equivalent of nails scratching on a blackboard. I do not mean to offend those who like this music, but the first song to which I was subjected was Queen's "Ooo, you make me live" which is ironic when you are getting a diagnostic medical test. The second song I did not recognize other than that it sounded like the Who. Again, not my favorite sound to be forced to hear. But, I have experienced worse. For example, at my orthopedic surgeon's office in the waiting room, they play techno music. Luckily I have learned to bring my iPod to drown it out when I have to wait the customary hour for my appointment. And, I recall that I was subjected to loud but sanitized hip hop music when I was in recovery in a surgery center a few years back after a colonoscopy.

I asked the technician today if she chose the music or it was piped in by the medical practice. She got defensive (apparently my voice, like my face, does not play very good poker). She explained that it was her choice and her radio and many of her patients had commented how much they appreciated and liked the music. Of course, almost all of the people who get a carotid artery ultrasound are 50 and older so the Who and Queen are the sounds of their/our adolescence. No wonder most of them like it. Me, I would prefer silence. Or classical music, like my dentist plays when I am trapped in his chair at his office. But I suppose my classical music is another person's Queen or elevator music or Pretenders.

If I were Queen of the World, I would turn off the soundtracks of our lives. Do we really need aural stimulation all the time? With apologies to George C. Wolfe, bring DOWN da music, bring DOWN da funk.

Arriving?

2011-05-18T08:37:00.000-07:00

It never ceases to amaze me that no matter how much I know there are so many things that I do not know. I have spent a good deal of my life learning things. I went to school forever, obtaining three graduate degrees. After a short stint in academia, I settled into a career in law, specifically litigation, where each new case, for the curious, is a bonanza of new information to be learned. I work now with technologies and the internet as well as copyrighted content. But what I know about technology is small compared to the experts I must frequently consult to explain the way the internet works. I also read a lot for pleasure -- mostly nonfiction rather than vacation novels, so I think that I am exposed to a lot of ideas.

However, this week twice I came across a term that was new to me. In two different articles, I read about arriving at or finding "Ithaca". To me Ithaca is a city in New York state, home of Cornell and one of my friends from college. I also recognized that it had some reference to Greek mythology, but I am not so well educated or well read that I understood the reference.

In the first article, the reference was to a young man who was top graduating senior from UC Berkeley this year. This young man had dropped out of high school after his parents refused to let him take the SATs necessary to attend college. He made a living as a professional cellist for several years and then returned to community college until he could transfer to Berkeley. His studies lead him to an academic passion for sociology, his so-called Ithaca.

The second article in the LA Times by Yolanda Reid Chassiakos, concerned the familiar midlife crisis issue where the author, a physician, discussed the stresses of one of her patients. That patient, a woman in her 50s, had divorced and returned to school after her nest was empty to study screenwriting, an difficult occupation to enter especially as an older woman. At the end of the article, Chassiakos said that she herself was satisfied with her own life as a doctor, mother, wife and writer. She (the author) had "arrived at [her] own Ithaca (destination)".

I was grateful for the definition in the LA Times article because after reading the first article about the Berkeley graduate, I did some online research about "Ithaca". As I suspected, it was likely a Greek mythology reference to the Odyssey given that Ithaca was Odysseus' home to which he ultimately returned. That reference still did not make the usage completely clear but I also found a poem entitled "Ithaca" by Constantine Cavafy which starts as follows:

When you set out on your journey to Ithaca,

pray that the road is long,

full of adventure, full of knowledge.

This little exercise in understanding the reference to Ithaca has reminded me that, unlike Chassiakos, I have not reached my Ithaca. Hopefully I never will. Whether my road is long (and I still grapple with that issue every day), I am intent on continuing to learn and continuing to have adventure. May you all feel the same way.

The Good Writer

2011-05-15T14:28:00.000-07:00

I have a day job. It is not unlike the day job of the character in the TV series, The Good Wife. I am essentially doing the work many times of a junior litigator in my studio lawyer position because we do not have any one else to do it. My job is interesting sometimes and frustrating at others. At least I do not have to deal with a public figure cheating husband. But I do still do document review for discovery (a task too boring for TV) and (shudder) depositions. At times I even get to do some policy work and am allowed to think for myself.

In light of my day job, I have this fantasy that in my spare time I could be a writer. So I started this blog to write little essays on issues, frequently with a personal twist. It has been fun but I have not really been able to build a particularly large readership. I do very much appreciate those who do read what I write. I would love to have more people to appreciate.

It occurred to me this weekend that perhaps it takes a lot more than what I have to be a "good writer". I am listening to Joyce Carol Oates' new nonfiction book, A Widow's Story, A Memoir. I marvel at her choice of words to describe certain events many of us have experienced. For example, I loved her characterizing her and her husbands' reaction to a car accident as being flooded by cortical adrenaline. Most of us would not add the descriptor that the adrenaline was "cortical" and yet it sounds so much more precise and important than calling it merely adrenaline or epinephrine. I am not sure what "cortical adrenaline" means and cannot find a readily available definition. Adrenaline comes from the adrenal gland. Cortical typically is used for cortex which brings to mind the brain, but in fact merely means the outer part of an organ. So there is, for example, an adrenal cortical part of the adrenal gland. The adrenal cortical gland does not, however, secrete epinephrine aka adrenaline. The adrenal medulla does that. Anyway, while I obsess and linger over the precise meaning of words, Oates makes her experience sound oh so different from the rest of us who have experienced sudden stress. Her use of language carries over into the more central story of the book, her coping with the death of her husband of 46 years from an illness. I hear her descriptions and somehow the grief from loss seems so much more palpable and the mundane events such as bad parking jobs and decisions to go to the emergency room much more dramatic.

Writing is simultaneously an act of precise use of words and the use of smoke and mirrors to create an impression. I would love to be able to give up my Catholic school girl need to be pristine and submerge myself in the mud bath of elegant, if not always accurate, expression. Readers, are you listening? It's me, Margaret.

What a Difference Forty Years Makes

2011-05-04T09:00:00.000-07:00

As I watch my daughter explore the joys of attending a large prominent university, such as the numerous and affordable study abroad programs and the interesting interdisciplinary majors such as Peace and Conflicts Studies, I am filled with nostalgia for those days when I was getting ready to attend college forty years ago. I noticed the other day that my alma mater had assigned the book, Immortal Life of Henrietta Lacks, by Rebecca Skloot, to incoming freshman to read. I remember getting, in the late spring of 1971, the list of books to read before attending Smith. I believe we had to read several books although I cannot remember any of the names of the books I read except for one, The Feminine Mystique.

Betty Friedan had also attended Smith College and had studied psychology, which wound up being my major although in 1971 I thought I would major in American Studies. Her book had a profound effect on me which permeated my college experience and has influenced my life as I became part of what my daughter tells me is called the second wave of feminism. See also here. I skimmed a summary of the book this morning and noticed that it was also likely the source of my distaste for Freud in my studies of psychology, despite the views of some of my friends at Yale. (I remember reading Freud in a car while waiting for a friend at Yale one summer during college. I read it quickly and dismissed it even more quickly because I was intent on embracing the scientific model of understanding human behavior)

Friedan's book also talked about self realization as a higher goal and caused us to disdain our poor mothers who gave up their own lives to be stay at home housewives who could only live through their children's accomplishments. I resolved never to be like that and found myself working throughout my children's childhood because I needed to do something other than raise children. However, NEWS FLASH, I have concluded that a mother never completely has her own life and I still cannot avoid embracing my children's accomplishments. When my son graduated magna cum laude from college I could have burst with pride. And my daughter's acceptance into Berkeley evokes the same feelings. Their accomplishments provide me overwhelming joy as if I had done them myself.

It is interesting, however, to consider also what will influence the women going to Smith College now based on what they have been assigned to read. One could view the current selection as much a reflection of the times and history as the assignment of the Feminine Mystique was to my cohort. The Feminine Mystique reflected social change as a result of civil rights movements to improve the lot of particular groups in society such as African Americans and women. Today, while we have problems that affect us globally--human rights violations, environmental changes, economic uncertainty-- a book like the Immortal Life of Henrietta Lacks focuses its magnifying glass on issues of individual rights vs. the pursuit of science. Lacks' cancer cells were incubated without her permission in 1951 and continue to exist today. Their propagation has been the source of significant scientific discoveries in cancer, hemophilia, Parkinson's disease and even lactose digestion and human longevity, according to author Skloot. The book also touches on another big issue of our time, the juxtaposition of religious faith with science. Lacks' daughter is exuberantly religious, believing that her mother's spirit continues to influence events such as Skloot's writing of the book.

The young women of 2011 are facing a different world than I did in 1971. Given the overwhelming proliferation of electronic information and educated people's almost obsessive trust in science, the examination of the ethics of an even earlier time, 1951, in taking someone's cells without permission which, in turn, would yield so much valuable information for humankind, is an interesting exercise. My view of 1951 was through the lens of how the post war period affected women's lives and, as I have said, had a profound effect on my own life. Hopefully for these women the consideration of ethics in science (particularly in view of the fact that Lacks was African American) will have an impact on their future and their view of the rights to dignity and self determination of all people. Someday their children may describe that view in a wave theory.

And the Winner is . . .

2011-04-29T17:20:00.000-07:00

UC Berkeley Sather Tower

So my elitest tendencies are going to be assuaged. My daughter has been admitted to and will attend the University of California at Berkeley. UC Berkeley is ranked number 2 in the Academic Ranking of World Universities, surpassed only by Harvard.

ARWU uses six objective indicators to rank world universities, including the number of alumni and staff winning Nobel Prizes and Fields Medals, number of highly cited researchers selected by Thomson Scientific, number of articles published in journals of Nature and Science, number of articles indexed in Science Citation Index - Expanded and Social Sciences Citation Index, and per capita performance with respect to the size of an institution. More than 1000 universities are actually ranked by ARWU every year and the best 500 are published on the web.

The old war horse, US News and World Report, ranks Berkeley number 1 in national public universities, number 6 in undergrad education and 22 overall of national universities, based on a complicated methodology that you can find here (for world universities) and here (for colleges) but which includes quality of the faculty in terms of prestige of PhDs, selectivity, assessment by peers at comparable institutions, class size and graduation rate.

Not too shabby for a public university. All for roughly $12,000 in tuition a year. (assuming an 8% hike from 2010 tuition.) Kudos to my lovely daughter for her accomplishments (and to her boyfriend who also was admitted with his own stellar record!)

What a Difference a Few Decades Make

2011-04-28T18:48:00.000-07:00

Yale University

About 25 years ago, when I was a young associate at a Beverly Hills law firm, one of my favorite clients was ecstatic that his daughter had been accepted to UCLA. Given that I went to an Ivy League adjacent school, aka a Seven Sisters school, at a time when Ivy League schools were barely coed , I was steeped in self-satisfaction about the importance of my college and the Ivy League in general. I remember I had a huge argument with my client about whether UCLA was "as good as" an Ivy League school academically, although no one would dispute that they had a better football team than my college (!) I do not remember his arguments for the "goodness" of UCLA, (where incidentally I attended grad school and law school and had some familiarity as a teaching assistant of the supposed undergrad geniuses that were in attendance) except that UCLA was competitive in its admissions.

My view of UCLA now.

Indeed, today admissions to UCLA are still competitive--only about 25% of the high school and transfer students who apply are admitted. At Berkeley, it is slightly more competitive to get in as a transfer- 20% of those applicants were admitted in 2010 as compared to 25% of high school applicants to the first year class. Whether competitiveness is a good measure of excellence is another thing. Another of the most competitive universities in California is Cal State Long Beach (CSULB), because of preferences given to local high schools and the cost of the education. Tuition and mandatory fees at Cal State Long Beach in 2010-11 is a bargain at just under $5000/year, whereas Yale University tuition and fees for the same year hovers around $35,000. Is the education at Yale worth seven times the cost when the total for 4 years with room and board will exceed $200,000?! I must say that my view of excellence at this point is greatly tempered by bang for the buck when the bucks for the Ivy League get into the 6 figures. (My Seven Sisters college education in the early 70s, the best of my recollection cost about $12,000 which I understand was comparable to some state universities.)

There have been other studies suggesting that it is the person, not the school who matters, at least in traditional measures of success. Specifically, a recent study found that Ivy League graduates did not make any more money than those who were admitted to Ivy League schools but went elsewhere. The Ivy League also helped minorities and those of lower economic background more than everyone else, reflecting my mantra that what you know is important, who you know is essential. According to the study, Stacy Dale and Alan Krueger explain this result as follows:

One possible explanation for this pattern is that while most students who apply to selective colleges may be able to rely on their families and friends to provide job-networking opportunities, networking opportunities that become available from attending a selective college may be particularly valuable for black and Hispanic students, and for students from less educated families.

So all in all, I am thinking that public universities is the way these days. Unfortunately with cuts to our state budget, the state universities like CSULB and UCLA and community colleges will only become harder to attend. So with great pleasure, I can say now in 2011 that I am thrilled that my daughter has been accepted for transfer to UCLA (as well as four other UC schools--Santa Barbara, Santa Cruz, San Diego and Irvine). My former client is probably laughing out loud somewhere.

Memoir Dans La Toilette

2011-04-22T11:51:00.000-07:00

Apparently in French, un memoire is not an autobiographical work but a short incisive essay, like the type I write here (smiley face). In light of events this week, "memoir" might need to be redefined as a work appearing to be about true events but in fact fictionalized for better storytelling.

Greg Mortenson, the author of Three Cups of Tea and Stones into Schools, both of which I read and recommended, is under siege from Jon Krakauer, an eminent, best selling author of nonfiction such as Into Thin Air and my personal fave, Under the Banner of Heaven, and 60 Minutes. Krakauer has i-published, through Byliner.com a short book, Three Cups of Deceit, (now available on Kindle- all author proceeds go to a Stop Girl Trafficking Project), which outlines evidence that Mortenson told some tall tales in the two books and engaged in some financial shenanigans with his nonprofit NGO, Central Asia Institute (CAI). The night before the Krakauer book was i-published, 60 Minutes ran its own expose with interviews of Mortenson and Krakauer.

The allegations of fabrication in the Mortenson books, (which were actually written by others, by the way, based on stories told by Mortenson, even though Mortenson claims in the book to have written Stones into Schools himself) bother most people, I think, because we want to think that memoirs are true. I believed what Mortenson wrote and feel somehow gypped to learn that certain events were likely made up or embellished. The kidnapping, for example, by the Taliban, likely did not happen. Krakauer has talked to those involved (with a caveat that one of his sources was described by another as a con man) and produced pictures of the event showing Mortenson holding a gun with his kidnappers and smiling. The description of his stumbling into Korphe as the first locale of his school building also appears to be a good story but not really true, although Mortenson contests that representation, but concedes conflating facts for better story telling (remember Janet Malcolm and Jeffrey Masson) and conflated quotes) We have already lived through the James Frey scandal and we all live with the reality that reality TV is not real but scripted. What makes this so different and why do we feel betrayed? I think we all believed that Mortenson was a hero doing good for others and such a person should not take liberties with the truth in his storytelling. Network TV we expect to be entertaining and unreal but not stories of helping children in Pakistan and Afghanistan.

The alleged financial shenanigans, in many ways, bother me more. Just as Mortenson was fast and loose with the facts in his books, Krakauer presents evidence that he was fast and loose with the finances of CAI, which has grown to a $20 million business. When expenses relating to the creation and promotion of Mortenson's books are deducted from "program expenses", the amount going to the program hovers more around 50% which should be a big FAIL in Charity Navigator. (Charity Navigator gives CAI 4 stars, its highest rating, but also now has a Donor Advisory based on the Krakauer/60 Minutes allegations). Krakauer also contends that CAI made up documents (because it did not have them) to support the costs and expenses of the schools when it was audited in 2010. Three Cups of Deceit at 49.

Nick Kristof feels, based on his personal experience with the man and the schools he built, that Mortenson should be given the benefit of the doubt so far while the investigation continues given the good that Mortenson has done where no one else has tred. Kristof says:

As we sift the truth of these allegations, let’s not allow this uproar to obscure that larger message of the possibility of change. Greg’s books may or may not have been fictionalized, but there’s nothing imaginary about the way some of his American donors and Afghan villagers were able to put aside their differences and prejudices and cooperate to build schools — and a better world.

Should we forgive Mortenson his likely peccadillos, or should we hold him to a higher standard because his story lulled us into giving him more of our trust? In light of the fact that Mortenson seems to genuinely qualify for the status of someone who can write a memoir--i.e. has done something memorable and in fact, productive, I am inclined to agree with Kristof. However, I also agree that transparency in charitable organizations must be paramount. Someone really needs to audit CAI and get it back on track so that the work can continue, with or without its larger than life founder.

False Alarm

2011-04-17T15:43:00.000-07:00

Cedars Sinai Medical Center

Last week I mentioned that my oncologist told me my CA 125 levels were a wee bit up. So I trundled into Cedars Sinai on Tuesday for a CT scan. I showed up a bit early and was given a beeper like they pass out in restaurants. I went to wait with others in the truncated due to construction waiting room. Several women wore doo-rags which did not at all make me nostalgic for those days when I too did not have any hair. I fully expected to be joining those ranks again and was considering where to get my head shaved before the hair fell out when my beeper went off for me to go into infusion center.

I spent many, many hours in that infusion center and, like Pavlov's dog, I had a strong visceral reaction to the stimulus. They told me to sit in a chair (the kind that combine a recliner with torture implements) and shortly a technician came to ask me what flavor barium I would like. I chose berry. Then another young man came up to me and stated, "My name is Jose and I will be your infusion technician today". What?! First, the restaurant metaphor only should go so far and second, why did I need an infusion? Surely he was mistaking me for a chemo patient. I only was getting a cat scan.

Of course, I had forgotten that they need to inject a dye through an IV during the CT scan so after a few minutes of arguing with him that I really should not have one of "those things" in my arm again, I acceded and found myself the proud owner of an IV catheter in my left arm inner elbow. I told him to do the left arm because I still have trouble with tendonitis and frozen shoulder in my right arm. However, as we will see shortly, I made the wrong decision.

As my "infusion technician" was stabbing me, another nurse type person (sorry, but I can never keep their functions straight--technician, assistant, nurse-- you all seem the same to me) approached and greeted me by name. "Mrs. Cancer Patient, you're back! You look wonderful!" I felt like Norm walking into the Cheers bar. It was lovely to be remembered in a place where it is easy to feel anonymous. We chatted for a moment and she wished me luck in my test. I must say it was a nice feeling as if I had a friend there in a place that otherwise gives me the creeps.

I was escorted to the scan center and started the long wait for the barium shake to work its way through my body. Initially I was seated next to a whiny young teenager fussing to her mother that she was hungry as she waited for an x-ray. My first reaction was self-centered because I could not understand why this girl was acting like a 2 year old and her mother was putting up with it. But I decided to try to push aside my annoyance because I realized that no one goes to that particular place unless they have cancer. I felt for both the child who has to deal with such a grown up problem and her mother who clearly has that burden to carry. Luckily for them (and me) the girl got her x-ray done so she could get something to eat.

Eventually I was called into the room and told to take off my bra. At that moment I realized that having the IV in my left arm and having a bum right arm made that task impossible. The technician, luckily a woman, helped me out and gently placed me on the scan table in a way that allowed me not to raise my arms completely over my head (which I can't do anyway). Ten minutes later and two hours after I had arrived at Cedars, I was done and out of there.

Then came the wait. I knew that the images were done immediately and transmitted electronically to my oncologist very quickly. The trick is his having time to read the results given his hectic schedule. I kept my cell phone ringer on all day Wednesday and when I had not heard by Thursday morning, I called and left a message with his office. Anxious? Not me. Well, maybe a little. OK. Maybe a lot.

Fortunately, my oncologist called Thursday afternoon with "good news and better news". The good news was that the CT Scan did not show any tumors. The better news was that he was able to see a hernia that explained the funky blood test results. The hernia does not cause me any discomfort so it is not going to be treated for now. And in the future, any anomalous CA 125 readings would be "calibrated" with the hernia in mind.

So I dodged the bullet . I am not having a recurrence of the cancer at this point. Time to take a trip somewhere to celebrate! Looks like Santa Fe, here we come.

Can o' News

2011-04-13T21:40:00.000-07:00

Today a few news items caught my eye so I thought I would open up a small can o' news for this entry.

First, my former Congresswoman, Jane Harman, lost her husband of 30+ years, Sidney Harman. I have said here before that I have a real fondness for Congresswoman Harman. I am sad for her loss and initially wondered if she left her office to spend more time with him at the end. He died from complications of AML, a form of leukemia which reportedly was only found a month ago. She gave up her office in December so I am likely wrong but I want to think that her decision to leave was affected by her personal life. Mine would be.

AML was a centerpiece of the wonderful nonfiction book, Emperor of All Maladies, A Biography of Cancer, which apparently is being turned into a documentary movie by Stand Up 2 Cancer and Spider-Man producer, Laura Ziskin. I really enjoyed reading the book and I suspect a well done documentary about the history and treatment of cancer will only help us all as this disease affects more and more people we know. Ziskin, incidentally, is a stage 4 cancer survivor or as she says, "living with cancer."

But, as usual, I digress. Cancer, as always, is on my mind.

The other piece of news that intrigued me today was the announcement of a new American English translation of the Latin Mass for Roman Catholics. Now the Nicene Creed includes words like "consubstantial" rather than "at one in being" to replace the Latin "consubstantialem" ( a great word to sing in Latin, by the way, in one of the numerous Latin masses out there--like the Bach B Minor or a Haydn Mass). And some, of course, blame the use of the word "consubstantialem" as an imperfect translation of the Greek word, homoousian, on the absence of a word for "being" in Latin.
However, it seems fitting that such an obtuse word would be used to describe one of the most complicated concepts of Christianity-- the unity of the Trinity.

Another change involves the response to "the Lord be with you". The current response is "And also with you". The new (old) response will be "And with your spirit" which mimics more directly the Latin "Et cum spiritu tuo". I remember the Latin mass from my childhood and I have this vague memory of the first translation of this particular phrase being "and with your spirit". According to the NY Times article, this particular change is being made to signify more formality in the relationship between priest and supplicant, and to harmonize the response in English with how it is translated in other countries. I am not sure how it makes it more formal but I do recognize the paternalism. After all, priests are called "Father" in a religion that does not allow women to be priests.

As I was running the latin phrases through my mind while reading the article, I had a moment of confusion in my dotage about the Latin phrase that yield the "et cum spiritu tuo" response. At first, I only could think of Dominus Nabisco and when I typed it out, my autocorrect on the iPad changed it to Dominos Nabisco. A tasty alternative to the correct "Dominus Vobiscum" although perhaps a bit fattening.

Back So Soon??

2011-04-09T13:59:00.000-07:00

Every three months I visit my oncologist for a blood test and checkup. Yesterday was one of those visits. The checkup went fine and my oncologist happily noted it was my one year anniversary. Not precisely because I was still undergoing chemo until the end of April but close enough.

Later in the afternoon, however, after a full day of BS at the office, I got a call from the doctor's office on my cell. It went to voice mail before I could pick it up and when I checked, my heart sunk when I realized that the doctor himself, rather than the nurse, had left me a message. "Hi cancer patient X who is supposedly in remission. I wanted to tell you not to be alarmed but your CA125 levels, although still low, are up and have been going up. I do not believe you are having a recurrence but to be sure I want you to come in for a cat scan."
photo © 2011 Thirteen Of Clubs | more info (via: Wylio)

My first thought was to call my husband because telling someone not to be alarmed is like saying don't look up now at the sky. Who can resist? My husband was on the phone with my oncologist at that moment and had him call me back. The oncologist repeated the message, again told me not to be alarmed because recurrence does not fit the pattern of my increase which has gone from 8 to 13 to 23. Typically you should be alarmed if it goes from 8 to 50 to 200. So I asked, if not recurrence, what causes this type of increase? He said that it could be measurement error or other diseases that affect the abdomen such as pneumonia (go figure) or ulcers. Since I have been feeling pretty good recently and have had no such illnesses, I have to put my eggs in the measurement error basket. Of course, instead I think of all the things that I could be facing-- more chemo, loss of hair, loss of taste, fatigue, more neuropathy etc. And one of my first thoughts was to call my friend Ann, which I cannot do. There are no cellphones in heaven.

When I got home I checked the internet but it did not help. Surprise, surprise. I am not unique in these experiences or fears. Sometimes this pattern DOES mean recurrence. However, one good piece of info I found that the doctor did not mention this time (although I believe he has told me in the past) is that below 35 is considered normal. Unfortunately the pattern of increase is important and even with "normal" CA 125 levels some women have small tumors.

I have been researching effects of radiation from cellphones because I find a disconnect between the recent NY Times article saying "beware" of cellphones and the National Cancer Institute's tract on cell phones and cancer. The former article talks about a new study reported in JAMA showing an effect of cellphones on brain metabolism, which is not clearly connected to cancer. However the NY Times article made it sound like cancer is a possibility even though it does not cite any supporting studies. The National Cancer Institute article relies on a multinational case-control study (see 1 below) called the Interphone Study, which finds no conclusive relationship between cell phones and cancer. I really do plan to read more and study this issue more to look for biases and issues because people who I respect are concerned and I do not want to dismiss that concern without a deeper dive.

Why do I digress to cellphone radiation? Simply because the CT scan I now have to have is a source of significant radiation. One scientist claims that when you convert the measurement systems so you are comparing "apples to apples", CT scan radiation is higher than what Fukushima Daiichi was putting out at the plant after the first fire when a "significant increase" was reported. People here on the West Coast were worried about the plume of radiation and yet the typical cat scan is so much more radiation than we could every get here from the nuclear accident in Japan. In 2009, around the time I was having my first CT scan, a study reported that CT scans are unfortunately the cause of cancer as well as the finder of cancer. Ooops. If I believed in God, I would shake my fist at Her in Jon Stewart fashion.

1. case-control study (KAYS-kun-TROLE STUH-dee)

A study that compares two groups of people: those with the disease or condition under study (cases) and a very similar group of people who do not have the disease or condition (controls). Researchers study the medical and lifestyle histories of the people in each group to learn what factors may be associated with the disease or condition. For example, one group may have been exposed to a particular substance that the other was not. Also called retrospective study.

What a Difference a Year Makes

2011-04-01T21:09:00.000-07:00

Finally the bad weather has abated. This week I started walking at the beach again on a regular basis. I have not done so since before my tumor was found in December 2009. It was great to get out and see the waves in the morning. I am listening to course on Chinese history while I am walking. In 2009 I walked my way through Team of Rivals, among other books.

One of the days I was out I saw a woman wearing a beanie who clearly had no hair. She was walking vigorously with two other people. I saw that she also had no eyebrows. I remembered that a year ago now I had no hair and no eyebrows. Unfortunately unlike this woman, I was not able to walk at the beach. I had no energy or ability to shake off the feelings of nausea and dizziness that overwhelmed me at the time. It amazes me that an entire year has passed. I made it through that difficult time but am finding it hard sometimes to handle the losses I have had in the past few months, such as my friend Ann.

Next week I have another one of my quarterly checkups. I am not quite a year free of cancer and in the back of my mind I worry about its return. I make inappropriate jokes about it which make my friends cringe. Perhaps because of my talking with Ann about her dying for the past three years, I am more comfortable talking about death than my contemporaries. Death happens, my friends, to people our age. We need to be able to talk about it and even joke about it. At least I do.

One of the great things about being out walking at the beach is seeing one of my neighbor's creative use of lawn statuary. Here are three different settings for these stone(d) birds:

St Patty's Day 2010

Thanksgiving 2010

Opening Day Dodgers March 2011
"Buy me some peanuts and quacker-jacks"

Aging Gracefully

2011-03-25T13:02:00.000-07:00

We spent last weekend at the Fairmont on Nob Hill in San Francisco. The hotel was built from 1902 to 1906 and was days away from opening when the major earthquake (estimated to be a 7.9 on the moment magnitude scale) struck San Francisco on April 18, 1906. It survived the earthquake but was substantially damaged by the subsequent fires. The hotel eventually opened in 1907 , which incidentally is the year my Dad was born. It changed owners over the years, fell into ruin and was reborn after WW2, and suffered the slings and arrows of various decorators. The famous Tonga Room was the site of the first performance by Tony Bennett of "I Left My Heart in San Francisco".

Parts of the hotel as it exists today fascinated me-- the grand lobby, the beautiful Laurel Court Restaurant and Bar with its chandelier and central circular staircase heading downstairs, the gorgeous wood doors on the rooms. Our room was on the 6th floor of the main hotel,which has 7 floors above ground and 2 below. It was next to the Singapore Suite, which announced its name in an elaborate gold sign on the door. I like to think we were Singapore Suite adjacent given that our room was very small, but had a wonderful view of the Transamerica Building, the Bay and Chinatown. The room had a great face lift but the walls were thin, like the skin of an older person. I had the pleasure to listen to someone talk and chant in Arabic for a half hour on Sunday morning as if he were in my room.

I was lucky to meet an old college friend on Friday afternoon. We sat in the Laurel Court bar area in big winged arm chairs and talked for hours while drinking tea and coffee. At some point an older couple came into the bar area. The man was easily in his 80s but the woman was a striking slender redhead with an ingenue bob haircut. The red hair fell across one of her eyes and covered part of her face in what would have been an alluring manner, if she had not been herself in her 80s and the object of numerous face lifts. She wore fashionable and colorful clothes which fit her well. I was so dumbfounded that I stared. My friend also stared. We agreed that her efforts to look like she was in her 20s were sad and misplaced. The 20-somethings who were with me at the hotel saw her later and declared her "scary".

How does one age gracefully as a woman? I am grappling with that issue now. I feel bad for judging the woman who felt the need to recreate herself as someone 60 years younger than she is. I am struggling with how I look relative to others my age and a bit older. I have two friends in particular that I have seen in the past week that look surprisingly like they did 30 years ago-- their hair and faces and bodies do not betray their age like mine do. I have gray hair, a dumpy middle age body and a wrinkled face. I want to look younger again and have people tell me like they did when I was in my 40s that I looked ten years younger than I was.

For a while I thought the gray hair made me look more serious and gave me gravitas. But I no longer feel that as I realize that I am still treated with minimal respect at my job-- where there are clearly the grownups--senior management-- and the rest of us, the kids. I also have been told that telling people that I am old and decrepit (as I look and feel) is not a great way to brand myself. But of course, I worry, what is the threshold for looking okay while appearing younger than you are and what the woman in the hotel unfortunately was--a caricature. In Japan, we saw 40 year old women dressed like their teenage daughters in short frilly shirts and fishnet stockings. I found that effort to look young also a caricature. So if I show up at work on Monday with blonde hair again, am I a caricature?

Like old buildings with thin walls that practically cannot be replaced, the older person can only do so much of a makeover to appear young and vital again. Our minds may be that of a much younger person (God willing) but our bodies have their limitations. I suspect I can still squeeze a few more years of looking younger out of my body before I get the response that I am scary. At least I hope so.

Luck o' the Irish

2011-03-17T20:45:00.000-07:00

Today is St. Patrick's Day, a day of wearing of the green and drinking oneself into oblivion. I have written elsewhere how I do not care for holidays that celebrate inebriation, such as the 4th of July and Cinco de Mayo. Today is another of those holidays which is heartily embraced by 21st century America. And why not? Who doesn't want to be a Riley or O'Malley today? 'Tis a great thing to be Irish. Erin go Bragh!

Part of my heritage is Irish. My maternal grandmother was of Irish descent and as my sister continues her search into that side of the family I will learn more about when my Irish ancestors came to the United States. I suspect the potato famine of the late 1840s since that is the typical immigration pattern.

Unfortunately I have little affinity for this part of my background. I read Angela's Ashes and experienced all too much familiarity with the tough Irish mother with high expectations for her children. I do not mean to imply that I experienced the issues that Frank McCourt experienced, e.g. alcoholism and poverty. I just know the type-- the mother who loves you fiercely while being critical and expecting you to exceed your own capabilities. My children might recognize the type too.

But more importantly, on this great and celebrated holiday, we should not forget that the Irish were the object of great discrimination in this country in the late 19th and early 20th centuries. "No Irish Need Apply" is something my Irish relatives recalled, even if some dispute its pervasiveness. (My father told me once that the real prejudice, even as late at the 1930s, was against Catholics, not just the Irish). The Irish did pull out of this discrimination, by establishing, among other things, themselves in politics (e.g. Boston and Albany NY, my home town) and eventually seeing one of their own elected President in 1960.

And today, everyone wants to be Irish. As a friend said, the Irish have contributed to the culture and thus are valuable, not withstanding earlier prejudice. Given that the stereotype for Irish men is one of alcoholism, having this particular holiday be a major drinking excuse does not bode well for what the culture has acquired from the Irish.

Written in a drunken stupor while wearing a green t-shirt. I salute you my forebears.

The Real 200th Post

2011-03-14T09:15:00.000-07:00

I was mistaken about yesterday's post being the 200th of this blog. My counter in Blogger showed it was the 200th but unfortunately, the counter included one draft I started a few weeks ago. So today is the genuine article.

I will be somewhat terse today with only one short observation. Last night I saw on television news the before and after satellite photos of the areas in northern Japan hit by earthquake and tsunami. The images showed stark changes and the commentator remarked that the before photos showed brightly colored roofs and distinct shorelines whereas the after photos showed only indistinct mud.

What occurred to me in terms of property loss (leaving aside the loss of life that is implied by such physical devastation) is that beneath or near those colorful roofs were small treasures that have also be wiped out. Our friend and guide in Japan when we were there recently explained that most Japanese homes and businesses try to add something esthetic to their property to show balance and harmony in life. So, for example, even though the spaces are small, you might see a small rock garden or some asymmetrically sculpted bushes on someone's property. These small spaces are beautiful and a testament to a life seeking beauty and peace in nature. And these spaces require a lot of work to maintain the esthetic quality. Here is an example of one such space I saw in an ordinary property in Kyoto. Multiply this space by all the roofs that were obliterated as shown in the satellite pictures and you get another layer of loss that main stream news overlooks.

garden space outside a home in Japan