Moonlight Beach

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Greetings from New Zealand/Aotearoa

Kia Ora!  Beautiful spring day in Christchurch, actually Kaiapoi, just north of town, on the south island.  Arrived Sept. 25 and hit the road on a driving tour (in a Hummer, no less) of the west coast for five days.  Got back to Christchurch Sunday night, the 30th.  Will post pictures soon.

As amazing as it is to be traveling, I must say it’s run me down much faster than before.  We’re staying at M’s client’s home in the country.  Ten acres with sheep and cows and fruit trees.  It’s wonderful, though I feel guilty about sleeping in and in this case, sitting in bed blogging  when I probably should be socializing with my host (the client’s partner, 2 y.o. daughter, and sister visiting from Australia).  But since I’ve not posted in some time, I thought I’d at least say Howdy and that I’m okay.

More news from the front later.  The food has been terrific.  I’ve eaten more potatoes in a week than the entire year in the States.  The potatoes here are magnificently delicious.  Never thought I’d say that – I thought I didn’t like potatoes.  Turns out they just don’t taste good in the States!  These are as good as the ones in France, possibly better.  Had delicious poached flounder last night.  Heavenly, especially watching M. gingerly debone an entire fish on his plate – twice!  I should’ve taken pictures.  Rats.

Am coughing more now, though actually less than in the States.  The air is very clear but since it’s spring and the orchard is blooming, I suspect I have some pollen allergies.  Thrilling to be here no matter what!  I can see why people don’t want to leave…

Welcome to the jungle

I don’t know where that came from but I feel like I’ve just fought my way out of one and now see the path to Rivendell…over the Sierras, across the salt flats and the Rockies,  to the mile-high city in the High Plains.  Yes sir, I’m finally on my way to Denver (Aurora, to be exact), to that heretofore mythical University of Colorado, (to attempt) to enroll in a clinical trial of BIBW2992 (afatinib) and cetuximab (Erbitux).  I’m not in yet, so I can’t get too excited.  January 25, the day before Hub’s birthday.  Prayers and mantras respectfully requested on that day.  Hope against hope the cancer holds still until treatment, hopefully Feb. 1st.

Just in from my oncologist: “Colorado lab called.  You have the T790m at exon 20.”  He’s king of one line e-mails.  So there it is.

In theory, this means my performance status would be better than someone who doesn’t have that resistance mutation, which is acquired by exposure to EGFR tyrosine kinase inhibitors (TKI’s), in my case, the wonder drug Tarceva.  My cancer became resistant to it some time ago.  A period away from these targeted therapies can restore cancer cells that are addicted to TKI’s, thereby renewing sensitivity.  I’ve already re-challenged Tarceva once, with good results (16 months).  The question is, will this novel drug combination of afatinib – a second-generation, irreversible TKI, and cetuximab – a monoclonal antibody/EGFR inhibitor be effective on my particular cancer?

Why not?  Because  lung cancer is a maddeningly individual, heterogeneous disease.  No lung cancer is like any other, although in the old days they thought it was enough to divide them into groups (Non-small cell, small cell, large cell, squamous, non-squamous, adenocarcinoma, BAC, etc etc).  Those groupings sprout subsets every day, and now it’s realized that each lung cancer patient is their own subset.  Treatment is like a shot in the dark, even if one gains the knowledge of a molecular biologist.  What we need is Elf Magic.

There are a few details to iron out, and if I get in, there’s the question of whether to commute or stay in Aurora for 6 weeks, since I have to go every week for one thing or another.  After the initial period, treatment is every two weeks.  Still grueling, but if I show any improvement at all, I may actually get to enjoy the Rockies and tour a bit.

The elevation and temperature might be difficult at first, but I’m excited for spring and summer.  I’m hoping for improved breathing and some outdoor adventure in the mountains!  If this proves to be as promising as the data, I’d even consider moving there temporarily (cost of living is less than the Bay Area, I’d imagine).  I’m already envisioning participation in a lung cancer research fundraising bike ride in Albuquerque, NM in March…

“Conquerors of the useless”, 180 (degrees) South

180 (degrees) South is a recent documentary about an outdoorsman’s journey to replicate the 1968 voyage to Patagonia made by Yvon Chouinard and Doug Tompkins.  Pioneering mountaineers Chouinard and Tompkins sought to explore and put up a new route up Mt. Fitzroy in the far Antarctic Chilean wildlands of Tierra del Fuego.  That adventure became the film Mountain of Storms, the inspiration for the trip which frames 180 (degrees) South.

It’s a documentary about adventure, but also at its core is a concern for the environment and the narrator’s developing awareness of how man’s modern lifestyle serves to usurp resources across the globe while simultaneously destroying the land from which those resources are generated.  The film touches on the fragility of the ecosystems in Tierra del Fuego and how we, in general, are indifferent to and negligent of the global environment and its effects on the present and future of other cultures.

What this film doesn’t explain too well is who these journeymen are, and how they all came together.  As it turns out, Patagonia produces a line of wetsuits, and the film director and some of the cast are in one way or another professionally linked to the company.  The obsession to surf the frigid waters is to test Patagonia‘s line of wetsuits, so a bit of marketing therer.  Chouinard and Tompkins are, of course,  the founders of the Patagonia and North Face brands of outdoor clothing and equipment.  Curiosity led me to discover more about the cast and crew, and that Julia Roberts’ husband was the film’s cinematographer.

Having once lived in Yosemite, the legends of (climbing) pioneers are familiar.  I have no idea who this generation’s legends are, but it’s profound that Tompkins and Chouinard  spend their millions buying up bits of “the last place on earth” and lobbying the government of Chile for the sake of preservation (see Conservacion Patagonica).

This film is worth a gander.  It sports a great soundtrack and we could all use a push towards simplifying our lives and remembering that conservation begins with us.

Procrastination

What happened to the excitement I used to feel when planning a trip to a distant land?  Why am I so nervous that I haven’t purchased tickets to the Philippines?  Is it the daunting cost and the lack of input from my other co-travelers that’s preventing me from making the reservations?

I think it’s fear of buying the tickets while hubby’s out traveling—when he gets back he’ll realize it was a mistake to commit for 10 days.  Or some irreversible work-related crisis will cause him to go to Timbuktu on the weekend before we leave (not covered under travel insurance).  That’s what happened on my birthday trip—he wasn’t supposed to travel anywhere that week and wound up going to New York.  Whatever, I don’t have confidence in buying these tickets on my own.  I’m dragging my feet.
Is there a deeper reason for this inaction?  Is it my lack of organization regarding this trip in general, because everyone’s leaning on me to plan the whole thing and I just feel too tired to even think about it?  Is it all the various and sundry things in daily life that tire me out (like fighting with AT&T about my phone/internet service or Kaiser premiums increasing by 18%)?  Am I just making excuses?
I’m whining.  I can’t help it.  Sometimes I wish someone else would just take care of this.  Hubby wants to go but HATES traveling.  So he’s pretty ambivalent.  I’m going because I haven’t really been there since I was young and I don’t recall much about my last trip…and it may be my mom’s and my last trip to the motherland before we kick it.  I guess I’m afraid of hubby’s reaction to the poverty, dirt, and third-world-ness of it all.  He’s been to a few third world areas–I don’t think it’s his idea of relaxation.  Sigh.

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Wherever you go, there you are

En route to the Bahamas

So I’m back from the floating petrie dish called The Cruise, and sick as a dog with The Flu.  This is the first time I’ve been sick since being diagnosed, ironic but true.  I did a great job running myself into the ground, what with hanging with the Coz, Epcot, Kennedy Space Center, being overexposed and stewing in 3,000 people’s germs over 5 days.  It was bound to happen.  Cruises are apparently one of the worst things for a person with a compromised immune system.  It’s germ central.

I returned to a flat tire, a dead battery, a messy house, cold weather…and now, I’m suffering the driest skin in the world.  What I’d give for a bit of that southern/equatorial humidity!  My skin looked and felt so good the past week, I could forgive losing my voice.  The warm climate allowed short sleeves and short pants, thereby alleviating the irritation of cloth on my skin.  Now I’m covered from head to toe in fleece, turtlenecks, socks, and the heater’s on itchy/beef jerky mode.  I’ve come to hate cold weather.
The husband gets home in a couple of days and the entire house must be disinfected!  That’s right, he gets to come home for 3 days.  It’s his second time home since Thanksgiving, and it’s never for more than 3 days.  The world could end and he’d still be in some distant land, working…
“No one on their deathbed ever said, I wish I’d spent more time at the office.
Anyway, I went on the trip to take the edge off my grief over Bruno and because it’s the only way I’d see my husband, otherwise.  We essentially missed Christmas, and spent New Year’s Day at Disney World.  I fell ill the following day.  The respiratory infection led to a chest x-ray, which showed a nodule on my right lung not previously seen.  However, it wasn’t on my last CT scan from December, so we’re letting it ride and hoping it has to do with this flu thing.  I have another CT at the end of the month, so I guess we’ll see then.  In the meantime, the cough is drying and making me increasingly worried.
Does anyone else feel like the end of the year just went up in a puff of smoke?  Because it felt like it didn’t really happen.  I’ll talk more about the trip and this year’s obituaries in another post.  I just felt like I needed to get this off my chest…no pun intended.

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