The Great Blizzard of 2016 left us with over a foot of snow, over two-foot drifts, and extreme gratitude for our snow blower! After three hours of snow blowing on Day Two, Jeff took a nearly three-hour nap - his rest no doubt enhanced by the blessings our grateful neighbors sent his way: the sign of the cross, the reverent bow, the “Thank You!” shouted over the roar of the machine.
We have added a couple of firsts
to our LuAnn Cahn-inspired list. On a romantic
weekend getaway to Bethlehem, PA, we decided to actually go into the Casino and
gamble! We each decided how much money
we would be willing to lose. I was
willing to lose just $1. It makes me
very sad to feel like I’ve been duped out of money - any amount. Jeff was braver, willing to put up a
fiver. And we decided if we were at
break-even, we would bet again but as soon as we were ahead, we’d stop. The
machines required a minimum of five dollars to play. I happily put my $1 back in my pocket. Jeff played a slot machine (is it called a
slot machine if you put in a $5 bill?).
The machine was so glitzy with pictures and messages that we had trouble
figuring out how to play. I read the “Help” screen aloud but it was Greek to
us. A kind gentleman nearby pegged us
for newbies and told us how to “win big” by betting $3 at a time instead of
$1. Jeff won his $5 back, “re-invested”
it and won $402! Done.
Another first was to take Rosie
and Penny by SEPTA Regional Rail to Philadelphia to have lunch with Aunt
Kim. Penny sat on Jeff’s lap by the
window and watched the world go by. Rosie
stood on my legs for a better view and at each stop asked, “Going to see Aunt
Kim?” We counted the stops until we
would see Aunt Kim, about 9 more, 8 more...
Aunt Kim met us at Jefferson Station and took us to a wonderful
establishment, Burgerfi, where you can get the best hot dogs and burgers! Rosie took in every detail of the restaurant,
danced to the music and thoroughly enjoyed Aunt Kim’s company. Aunt Kim thought the girls were pretty swell
lunch dates, too.
Last week Jeff told Dr. Porter that
he’d caught a 1982 Quincy, M.E. episode in which cancer patients were being
treated with gene therapy dispersed through the body by means of a virus. Sound familiar? 1982 Art imitates 2016 Life. Maybe you’d call it SciFi? The problem was that non-patients were
contracting that virus and it was deadly!
Dr. Porter was fascinated and
took note of the episode number. (Quincy,
M.E. Season 8, Episode 7)
Dr. Porter
believes it may be possible for Jeff to stop the Cellcept (Mycophenolate)
immunosuppressant after his April visit.
This is good news since GP Dr. Sullivan believes Cellcept may be
contributing to Jeff’s recent high cholesterol, as it does for about 40% of
patients who take it. Dr. Sullivan wants
to avoid medicating for high cholesterol because side effects include liver
problems and Jeff has had GVHD of the liver.
In any case, he wouldn’t prescribe it without Dr. Porter’s approval.
Unfortunately,
instead of getting a list of foods to eat, Jeff came home with a list of Don’t-Eats. He is quite forlorn. He says all his favorites are on the list:
marbled beef, ice cream, chocolate, soda…
I tried to focus his attention to an online list showing the foods to eat, including some of his favorites:
nuts, apples, oatmeal, beans. Dr. Sullivan also instructed Jeff to stop his
vitamins for two weeks to see whether that takes care of the foamy urine. All else is good.
While at HUP,
Jeff visited another MDS patient on Rhoades 7.
We’d been following Big Rich’s treatment and condition through his
friend, my boss at Rider. Rich is
getting chemo while waiting for a bone marrow match. Although Jeff had never met Big Rich before,
they had a lot to talk about. Jeff
encouraged Rich’s wife, Joan, to take the train into the city and offered hope
for a good outcome for Rich. “Nice
people,” Jeff told me.
Plans are
underway for a 5-year BMT Anniversary Party in June. Nicole and her family will be able to come up
from Atlanta for the occasion!
