It seems unreal that the last four weeks could pass so quickly. Much of it has been spent recovering and dealing with the many extreme side effects of this drug. Because this trial was phase one, the doctors couldn’t tell me any of the side effects that would accompany the drug, so it’s been very strange to tell them what’s happening and have them say “Oh, really?” or “Is that right?”
So after several bouts of intense unexplained pain, a day spent in the ER—trying to figure it out, an entire day spent at ORMC for transfusion, numerous doctor’s appointments, several days and nights eaten up by migraines (which happened to come on as a result of this treatment), and lots of questioning, why is my body doing this and that and everything in between, I’ve managed to squeeze in a little normal.
Things like teaching two days of preschool (monumental on my list of things I’ve done in the past 4 weeks!), trying to be nicer mom and wife (the pain really gets me), tackling two huge stacks of filing (the past five months of business and personal papers built up—the stacks combined were 2.5 feet high—I measured—did I mention I HATE filing?) and trying to get some (very little) writing done. We also got to see our friends Amie and Zach Houser over this last week. They lived across the street from us in Little Italy and it’s been at least five years. It was so much fun to see them and remember what good times we had and good friends we had in them! They live in Japan and we feel lucky they’d take time to see us in the short amount of time they were visiting Utah.
Ward feels grateful that I’m finally feeling a little more normal. Last night he said, “You finally seem like you.” I have looked really pale and been so tired. I feel more normal, so that’s good.
So here’s the plan. Thanks to the substantial amount of air in my study coordinator’s brain, my schedule has been dumped upside down more than once over the last 3 days. My flights have changed twice (she’s very glad I purchased trip insurance), my scans have been changed and moved more than twice and my way of speaking to her has become incredibly direct and clear. Now I will be going to Colorado on the 30th of March and staying for one night to complete all the scans and appointments.
That gives us one extra week of trying to be normal and we’re glad because our anniversary is this next weekend (13 YEARS!) and we are going to do something fun. Our kids are invited because we leave them too much for treatment, so we are going to have a fun little family trip.
9 months ago