Where in the World is Carmen Sandiego Now?

6 April 2017

Queridos, Gentle Souls,

Two weeks have flown by and David is packing to return to Oaxaca.  I’ve loaded him down with cheery things, like lots of dark chocolate (some with raspberry, other with orange bits, another with marzipan – no, wait, I might keep that one), different spices to try (more fenugreek leaves to store in the freezer so we can make that wonderful Persian leek frittata), some horseradish powder (I mean, we have to try that for the non-existent gefillte fish for Pesah), and some smoke flavourings because we don’t have a grill. He has new socks, a new cotton shirt,  a sleeveless vest (for the journey); new tennies. And don’t forget about all the meds we have to truck back and forth.  How much will fit into the carry-on he’s taking is yet to be seen.

He returns to warmth, sunshine, a dog, and two cats; a freezer with lots of prepared garbanzos, homemade tomato sauce (Thanks, Rebecca Raab, for all those tomatoes), enough granola for a week or two, chocolate chip cookies

(D, look in the casita freezer for them; surprise !), and homemade applesauce and apple butter, even if we didn’t harvest the apples off our trees. And he'll probably eat breakfast most times in the local mercadito with Lupita and her mom Irene spoiling him as much as they can.


And I remain with Dan and Jean in Wakefield RI.  Last year at this time the pulmonary hypertension specialist pronounced me nearly defunct and, if you’ll remember, I spent 3 months here with a brand new medicine trying to reverse that diagnosis. I did not expect to see 2017, but obviously the medicine has controlled a bit of the rampaging condition and I am relatively stable. And alive.

So, you won’t be surprised to learn that when the doctor’s office called in early March to tell me that there is another new  medicine in clinical trial status  I asked to be included.

Got off the plane from Oaxaca at midnight on March 23. By 7 am on the 24th I was in the clinic starting testing to see if I meet the specialists' needs vis-a-vis the drug trial. The tests went on for 4 days (24; 28; 30th; and continued to Apr 3) involving lots of blood; radioactive materials (to see how my lungs are and if they are prone to embolism – how can they tell that?); a right heart catheterization; what is

known as the 6 minute walk test [6mwt], which is a very important measure for stamina in lungs and heart; and so forth.  In between all of this I did manage to stop in the local “Savers” (a close kin to Salvation Army stores) and scored a nice pot, a Talavera pot for less than it would have cost in Puebla. Just so's you know, Debo & Judith.
[Okay, i can't figure out why the perfectly right-side-up image has decided to lie down.]

Finally, all results in and tallied and sent to the Eiger Bio-Pharmaceutical company’s investigative team in charge of this trial , I have learned that I am participant # 51 or some such out of a total of 60.

This is a 2 to 1 double blind study, meaning I may get a placebo. Still, nothing ventured, nothing gained. 

Since this is a clinical trial I have to stay here with the experts. They have to watch & measure me assiduously nearly daily for the first couple of weeks.  Then every 28 days another round of tests (6mwt; blood; breathing, …).  Well, you get the idea. For how long?  This trial lasts 6 months, but somewhere in the middle I need check in only once every 28 days. I'm hoping to hop a plane and get back to Oaxaca at least for a couple of weeks.  After Clinical Trial # 2 ends in 6 months I may get invited to continue on to # 3 in which all patients will receive the actual medicine for another 6 months. 

The medicine, called here ubenimex [note the mex ending, it’s sorta like a ref to mexico; or sometimes bestatin] – has been around for a couple of decades in Japan as an aid to those suffering certain kinds of cancer.  I feel its long  use indicates that I won’t die from trying it.  A point in everyone’s favor.  And how did ubenimex  get to this point, to have a clinical study looking at its possibilities for those of us with pulmonary hypertension?  Blithely I can answer what I have gleaned on the web: that researchers in the labs at Stanford just happened to notice that lab rats infused with / bred for (probably the wrong verbs)  pulmonary hypertension [PH]  and then given this medicine seemed to do much better. Some even seemed to not suffer PH at their previous levels. 

As my specialist cautions me, however, not everything that works in lab rats works in humans.   What looks good in the lab may easily fizzle in the outdoors.  Still, it is a start, and whatever info the specialists can glean will be helpful, either now or later and I am pleased to be a part of the process.

Lucky for me, in Rhode Island it is becoming more spring-like and I will get to enjoy once again the bloom of flowers, the coming of the leaves, and the early spring produce like asparagus. Even luckier, I have the support here of Dan and Jean who once again have made sure that I am exceedingly comfortable in the basement pied-à-terre (hmm, make that pied-below-terre).  Jean will coddle me in her inimitable fashion and we’ll both enjoy each other’s cooking.  Dan will tease me that I will spend a lot of my time at the local dump, where the free book exchange is always a delight and surprise. Who knows how many way-too-heavy cookbooks I’ll find this spring.  In fact just today in one of these "bookstore" visits, David and I grabbed a copy of the 1978 Bernard Clayton's  New Complete Book of Breads  which has been the guiding bread book in our household for the last, uh, well, more than 40 years.



A footnote for those of you who know how I suffer when it's cold;  This basement has zoned heat !!  It doesn't matter how chilly it is anywhere, I can sit in my 70-degree-heated basement rooms quite contentedly, thank you. 

I think I will not dwell on the unlucky-for-me bits.  I think you can understand how I’ll miss being with David immensely, how I’ll miss playing with the cats and the dog and the gardens and seeing all the people whom I’ve come to know and love.  I regret not being able to make it to the communal seder, although I can just as easily refuse to eat gefillte fish here in RI.

For the time being, then, I am cuddled up under a down comforter at 274 Broad Rock Road and doing what I can – yes, knitting and crafting and playing computer solitaire.  It’s a better scenario than the one painted for me last year and I hope there will be an even better scenario for March 2018.

Fondly,

Linda

 

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