March’s NIH lab results have gone missing, but they show that after 9 months on Ibrutinib, I’ve had a complete response to the drug in the blood. All counts normal! Bone marrow and lymph nodes, not so much. But they are definitely improving, and in time, they may get there too. I had a core needle biopsy of one of the lower right axillary nodes, and was instructed to stop taking Ibrutinib for a week, three days before and three days after the biopsy. It was disconcerting to feel how quickly the nodes began to enlarge and to downright hurt before the week was up. Relief came almost immediately once I got the go-ahead to start my favorite med again though. Looks like Ibrutinib and I might be partners for life.
I appreciate my sister Julie driving up on Sunday from SLC
to travel with me. We had some shopping
fun here on Monday before flying out on Tuesday the 12th. We greatly enjoyed visiting with NIH friends,
Lynn and Loren and Nancy and Gene in clinic, while we all waited to be called
back for our consultations. One received
good news (treatment may not be needed for a very long time), one received bad
news (she has to leave the trial for the second time due to another serious health
problem), and as stated above, my results were good. We waited and waited for almost 2 hours in
the pharmacy to pick up my three-month supply of Ibrutinib, finally deciding to
come back in the morning after the biopsy for them. The shuttle schedule makes it necessary to be
a little assertive sometimes. Miss it
and you could miss your flight, or you could be walking to dinner in an
unfamiliar city in the dark. The
radiologist wrote in her orders that I was to be observed in the day hospital
for 2 hours after the biopsy, but that would have made me miss the free NIH
airport shuttle, having then to pay around $100 for a taxi. No thanks.
The nurse made the necessary phone calls to secure the change in orders
I needed. But while they were pending,
my pesky blood pressure started creeping up, jeopardizing my release. I made myself think calm thoughts, and
breathe slowly, deeply. Worked like a charm, it went back down to normal. Just
in the nick of time I was free to leave!
Julie and I flew from the Dulles airport to Orlando. We were off to see the wizard, the wonderful
wizards of Hogwarts! Actually, it was
our sister Jami and her family we went to visit for a few days, but Harry
Potter’s hangout was on the list too. So
were the beach and the Orlando temple.
And we did it all, although the beach got short shrift with only a token
15-minute visit. Guess this means we’ll
have to make a return visit later on.
Jamie’s daughter Sarah accompanied us on our trip to Universal, and she’s
a lot of fun. She took being with three
grandmas well in stride.
Dan surprised me with a new microwave to replace our aging
one while I was away, and helped me send out the Easter packages to the
grandchildren when I got back. Thanks to
the love and consideration of many people, this trip was another success.
