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.