April 16, 2018

Kushi

We received an email from Kushi with this update:

     Hi all,

         I haven’t done one of these in a while for a couple of different reasons: there wasn’t the kind of information that one necessarily likes to share in a larger way, and I’ve been so busy down here in Miami first with directing the shows for Azamara cruises and taking care of Brian, and recently trying to dot all i’s and cross t’s to get us outta here (and taking care of Brian).

          After a positive reading of the most recent MRI (no new growth and the tumor site is shrinking) the doc has been weaning Brian from his steroids (which he's been on since October). He has actually lost about 20 pounds of muscle mass, mostly in the legs, and he continued to be very jumpy and anxiety-ridden, especially at night. Finding meds that would calm him without putting him to sleep all day has not been easy.  It’s apparent that all of the treatment is just educated guesswork, based on what’s come before, plus size and weight, etc etc.

         After some initial very strong progress once back in the apartment, Brian has relapsed. His left side is again non-functioning.

He can not stand, or even roll over in the bed, without considerable help. His tremors have worsened. He is in Depends all day and night, and I change him and remake the bed several times a day. He is often very confused (and aware of it). Despite the clock that tells him in words what time of day it is, he rarely gets it right, and is determined that there’s a time change between where we are and NYC. Judging by his questions and references, he is often in Beaver, OR in the 1970s.

He mostly knows me, but in the evening he calls me Dad, or Barry or David. Yesterday he was very fixated on Gasoline Alley, and asked me what comic strip we were in.

         Our very good friend from Boston John Manis (who, along with my dear Karen Kelly have been our medical rocks) is coming to Miami to fly back to LGA with us. Traveling with Brian in wheelchair, both big cats, 4 suitcases—well, John saw *that* disaster writ large, and volunteered.

         I have been getting excellent guidance and help from the Actors Fund ( thank you to my BFF Tom Viola for “warming the door” and his daily check-ins); Brian will be on my SAG-AFTRA insurance beginning May 1. At FGO he was covered by Florida Blue, an HMO (basically useless out of FL, except for emergencies).

         My hope is that, back in our home, and surrounded by the loving support of a lifetime of friends, Brian can regain his strength. And maybe some of the brainfog will lift, as well.

         And I, too, have been down here for too long without my family of friends—I’m pretty much operating on fumes by now...

         The movers come Monday morning to pack up what we are taking back to NYC. We are leaving the bed, so we’ll spend the final night here, hoping to keep Brian’s (and the kitties’) stress levels as low as possible.

         And then there are those six steps up to the lobby of 621 W. 172nd Street...       

Thanking you all for the prayers, thoughts, gifts, emails and calls. Brian has understandably not felt like talking, and the IPhone is not possible unless he wants me to dial or take dictation ( which was very rare).

Sending love,

Kushi

Please, get out your Prayer Wheels and ask your Divine Spirit Teachers and Guides to surround Brian and Kushi with Healing Energies, and Strength to get through whatever comes their way.

And may your Good Karma be returned to you all, many-fold.

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