Category Archives: Uncategorized

I’ve just finished one year of eculizumab.  Yes, it is still the most expensive drug in the world.  Yes, insurance is currently covering the cost, once the deductible is met (which this year would have been on January 1st–ha–take that, … Continue reading →

. . . Or what happened between November and now.  I got sick.  Lots of sick.  Apparently prograf + cellcept + steroids + daratumumab-still-in-your-system = petri dish for anything contagious.  So I’m going to go through this like the lightning … Continue reading →

Delaney Ozmun met me in Rochester on November 8 for my physical exam and full lab work-up on November 9, to be followed by the last daratumumab infusion #16, on November 12.  What a treat to have Delaney with me … Continue reading →

Did the fly-in, fly-out trick over the weekend–flew into Minneapolis on Sunday, out of Minneapolis on Monday, right after #15.  We’ve decided that it is unwise to try to fly in and out of Rochester in the winter, so Minneapolis … Continue reading →

It’s officially cold in Rochester now.  I flew in on Sunday, October 14, to a snowstorm that lasted the rest of the day.  Snowstorms in Rochester make dining decisions very easy–eat at the hotel!  Monday was infusion #14, which was … Continue reading →

As promised, some photos of the September trip to Roquebrune-Cap-Martin and St-Paul-de-Vence.  Various views from a window and of a window: Some outdoor shots from the garden that Princess Grace loved: Some family viewing: In Dolceaqua (okay, this is technically … Continue reading →

So France was lovely–Roquebrune-Cap-Martin and St.-Paul-de-Vence are now beautiful memories, and I have failed once again to blog about these far away places and their strange-sounding names.  Perhaps later, when I am remembering them through photos. The “Even Dozen” infusion … Continue reading →

Short update:  August 17 was infusion #10, three days after Day 77 of the daratumumab trial (the Go/No Go day), and four days after David and I arrived in Rochester.  Although my response has not yet been dramatic, nephrologist Dr. … Continue reading →

So Infusion #8 happened as scheduled on July 23–in at 6, out at 11, then David and Olive met me at the hospital–fully packed and ready for the drive home.  After spending one night at the Holiday Inn Express in … Continue reading →

Had Lucky Infusion #7 on Monday–and today is Thursday.  In at 6 AM, out by 11:30 AM.  We hope that this cadence holds, since I will soon be flying in and out of Rochester for the infusions. I should have … Continue reading →