Because the current experimental drugs can cause eye damage, David has an appointment at the ophthalmologist. The office is about six blocks away from MGH and parking is non-existent, so I find myself pushing his wheelchair down the sidewalks of Boston. What a comical pair: a grey-haired woman pushing a grown man in a blue-and-chrome MGH-issue wheelchair.
David is severely anemic and has very little energy or appetite. On May 18th, he stops taking the hydroxyurea to start another cycle of the clinical trial of MEK 162/BYL 719.
Mid-May 2017
As I research my journal and blog for what was happening 2 years ago, 3 years ago hovers in the background. At first I think the reluctance to ‘get to work’is writer’s block or plain laziness. But, just as in March, with its third anniversary of learning of David’s illness and second anniversary of the failure of decitabine, May is fraught with significance. May 2014 was the darkest time of his early illness; he came very close to dying. By May 2015, we lived day-by-day, conscious that David’s life was drawing to a close.
Last week, Jim and I drove south. We visited my younger brother, Mike, who is severely physically and intellectually disabled and lives in a group home in New Jersey. I pushed his wheelchair (another wheelchair) to a nearby garden center to buy tomato and pepper plants, basil, tomato cages, and a watering can. The garden plot in their backyard is tilled and fertilized and ready for plants.
Besides seeing our NYC kids and grandkids, we spent several hours at the Metropolitan Museum of Art. (What do you think: does the Metropolitan Opera or Museum have a stronger claim to the moniker, “The MET”?). Among the many treasures, we saw "Washington Crossing the Delaware", which reminds us of the excellent David Hackett Fisher book, Washington's Crossing.
The painting is huge: 12 feet tall and 21 feet wide. The golden frame, a reproduction based on a photo by Matthew Brady, is over-the-top patriotic, with an eagle, stars, and flags and spears.
Driving home, we left Interstate 84 and roamed the Connecticut countryside.
In Torrington, we discover the Ritz Café, a few booths and tables surrounded by a shop full of vintage clothes, hats, and jewelry, clocks and chandeliers. The clock-repairman waits tables in his spare time, maintaining the Torrington clockworks heritage.
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My sister-in-law was born/raised in Torrington. Her parents joined the church there. I visited last year and I went in the Ritz Cafe!
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