Sunday, September 16, 2012

No Trouble in Tromso

This year, after my annual July business trip to London, I planned for a trip with my husband to Europe somewhere so we could celebrate with travel our 30th wedding anniversary on July 10.  He wanted to retrace our honeymoon which was a three week trip.  I could not take that much time from work and I proposed we just go to Paris.  He did not want to go museum hopping so I proposed Grenada in Spain to see Alhambra and possibly a side trip to Morocco.  He hemmed and hawed about that proposal, in part because of the heat.  So next I suggested Scandinavia and we agreed we would go to Norway to see fjords.

I also wanted to see the midnight sun so I located a city in northern Norway called Tromso  Tromso is locate about 250 miles above the Arctic Circle and seemed to have decent hotels, midnight sun and events for a 24 hour in the light life style. In particular I wanted to go to the Arctic Cathedral which had a midnight concert everyday and is bathed in light through the many church windows.  My husband thought that would be fabulous, although I discovered later that he thought the cathedral was made of ice.  His interest waned when I told him it was a regular building.

We left London for Tromso on July 13, a Friday for those of you who believe in that sort of thing.  After five days of rain in London, and the beginnings of a cold,  I was not too keen to see the weather report of rain for the entire time we planned to be in Tromso.  So much for the midnight sun, I thought.
But the Nordic gods smiled upon us because when we arrived in Tromso after traveling all day (it is over a 1000 miles from Oslo, where we had to change planes from London) the sun was trying to emerge. 

Our hotel, the  Rica Ishavshotel, sat right on the water and is built to resemble a ship. The waterway outside the hotel eventually leads to the Arctic Ocean.  It is a prime landing place for cruise ships.
Rica Ishavshotel

Here is our view from our window at the Rica Inshavshotel at 9:00 p.m .

The sun was out just at about midnight. This was the view from our room at 1:00 am:

The church to the left in the above pictures is the Arctic Cathedral described above and the light from the midnight sun in the west shines through the windows into the church.
Arctic Cathedral

We missed the concert because we went up the cable car on the lower hill to the right in the pictures above.  From there we got views of the midnight sun in the west, as shown below.  The pictures above are looking east.

View of Tromso and Midnight Sun

Looking north at glow of Midnight Sun
We woke up for breakfast which was an amazing buffet feast but could not stay awake thanks to the return of the dreary rain.  Late in the afternoon, when the rain had stopped for a while, we finally dragged ourselves out to see some sights in Tromso.  We visited Polaria, which has as its claim to fame, bearded arctic seals.  We watched a short film about the northern lights, which do not occur during the summer due to the position of the earth around the sun.  Otherwise electric impulses generate the green tinged northern lights near the Northern Pole, which is not too far from Tromso.  Then we spent some time with the seals, who were much more fun to watch than I expected.


Bearded Seal

Clean shaven seal

Seal at play

We finished our time in Tromso having dinner at Aunegården, which features a cafe and restaurant in a historic building that was a butcher shop.  We got into the restaurant without a reservation by promising to vacate our table in an hour which turned out to be a challenge even for us, the original speed eaters.  I tried their vegetarian dish which was not that good but my husband had fish soup and some other fish that he proclaimed fabulous.  It is hard to be vegetarian in Tromso because there are not great vegetable dishes but there are wonderful fish dishes.  I did have one of the proclaimed cakes which met its reputation. The atmosphere was wonderful, including the large pictures from the early 20th century on the wall.

Interior of Aunegården

Aunegården Restaurant

Picture of entrance to what is now Aunegården

Aunegården building on left

Tuesday, July 17, 2012

Drug Shortages Part 2- the Scramble Continues

'Drug Free Zone? Free Drug Zone?' photo (c) 2008, Byung Kyu Park - license:
REPUBLISHING A POST FROM AUGUST 10, 2011 with New Postscript

 I have written 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 billPreserving 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.

Postscript July 16, 2012   Drug shortages still continue but have become "old news", i.e, not news worth covering.  For example there are still shortages of Taxol (paclitaxel) which will cost patients more if taxotere (docetaxel) is substituted. And drugs shortages continue to grow as an international problem including shortages of drugs to treat leukemia and myeloma, as well as first line ovarian cancer treatment, cisplatin.  However, the issue is not covered anymore by main stream media and only finds its way into print in specialized medical publications. The bills I mention above never passed, although one part of the bills requiring six months notice of expected shortages to the FDA did pass in June 2012 as part of another bill.  Worst of all, we are starting to hear anecdotally about people dying from the Doxil shortage. Why doesn't the media care anymore???

Monday, February 20, 2012

Just a Little Junk

Yesterday, an article appeared in the New York Times that echoed my feelings about reading these days. Dominique Browning writes that she has discovered that she does better on airplane trips reading "junk books" instead of Great Literature or even nonfiction.  She finds that works of George R. R. Martin, Sara Paretsky, Patricia Cornwell, P. D. James, Sue Grafton, Faye Kellerman, John Mortimer and Ruth Rendell allow her to avoid or deal with the unpleasantness of modern air travel characterized by its "herding, shuffling, squeezing, starving, sitting and suffocating".

I too have guiltily discovered the joys of junk books recently.  I too can get immersed in Ruth Rendell and feel somewhat empty at the end although I enjoyed it as I was consuming it.  My other recent junk books of choice include Michael Connolly books, particularly the Harry Bosch books which were recommended to me by a former California Supreme Court justice, and a Ken Follett book, Eye of the Needle.  I have also dabbled in John LeCarre books and raced through the  Hunger Games series (not to be confused with another junk series  that started with Game of Thrones).

However, where I deviate from Browning is the location for reading these books.  I tend to consume junk books either at home or in the car.  In fact, I find that I am able to read more serious books on an airplane, probably because I can not be distracted by the siren call of the internet.   I used to try to listen to nonfiction in the car but soon discovered that it is harder to follow nonfiction while driving than a well narrated fiction book.  And when I am home at night after reading "serious stuff" all day at work, a nice mystery can take the edge off and keep me away from the internet.

I know it is pejorative to call some of these books "junk".  I do not mean to offend those who read these as a steady diet.  Understand that this is my problem.  I feel the need to educate and enrich myself all the time and quite frankly the junk books are just good entertainment rather than enrichment.  Thus I feel guilty, which Browning also seems to feel, about too much indulgence in junk books which leave you feeling full but not really nourished. So I continue to slog through complicated nonfiction and sometimes even Literature but occasionally I crave a visit with Harry Bosch.  Oh, and if John Mortimer's Rumpole books qualify as junk, I should look into taking those up again.

P.S.  I am listening to Don Quixote (Edith Grossman translation) on audio disc in the car these days.  Sometimes I yearn for Ruth Rendell but I am enjoying the book for the most part.  It makes me laugh at times.  Not bad for what is reportedly the most meaningful book ever written and the one novel you should read before you die.  Substance and entertainment.  What a concept.

Sunday, January 22, 2012

Bottomless Bucket List and Beauty of Nature

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, 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. 

Friday, December 30, 2011

Boxing Out the Box Office

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.


Thursday, December 29, 2011

Useful Gossip

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.

Saturday, December 24, 2011

Have Yourself A Merry Little Christmas

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.