Friday, June 17, 2016

Update - June 17, 2016

The "information center" with meds, phone numbers,
and appointments.  We run a tight ship. ;-)
As of today my brother Kurt has been out of the hospital and living in his own home for two weeks.  Things were a bit shaky those first couple days while Kurt acclimated himself to the new realities of daily life brought about by the sudden and unpredictable shifts in his vision (“visual episodes” or “visuals” as we’ve come to call them), but thanks to his determined nature, his adaptability, and the help of his family and some dear friends, he adjusted very well even to the point of coming to terms with his 24 hour caregivers.  We all worked together to move his bed and other gear down to a first floor bedroom, and after struggling through a bit of a “learning curve,” we got his many medications arranged in a manner that works for everyone – we established a good routine.  He takes his chemotherapy drug in the form of one pill every night before bed, and so far other than some skin irritation and some fatigue, he has avoided any serious nausea.  He makes daily trips to Duluth for radiation every weekday morning.

I’ve come to the painful realization that, where Kurt’s cancer is concerned, pieces of actual good news are few and far between, so when we met with his radiologist on Tuesday morning and reported that his vision had “settled down” a bit, the doctor’s surprised reaction became cause for a minor celebration.  He said it’s unusual for a patient to have any noticeable changes after only one week of treatment, and though his eyesight is still short circuited and unpredictable, the fact that he was no longer seeing vivid hallucinations was “…a very positive sign.  Excellent!”  :-D

Kris, Gina, and Swen making short work of a big job.
On a side note, Kurt enjoys a bit of gardening, but unfortunately “life got in the way” of this year’s plantings, and he was left with a number of tomato and pepper plants that needed to be moved outside to larger containers.  Because this became a source of daily concern for him, some of his friends rose to the task and worked together to get the job done.  I snapped this photo through his kitchen window both because the scene warmed my heart and also because it’s highly symbolic of the manner by which Kurt has been able to avoid a hospital room or residential rehab facility in favor of his own home…where he’s most happy.  “…many hands…”

The outpouring of prayers, positive energy, and support continues to touch and amaze us all.  Please keep in mind that Kurt is at his best when he is entertaining visitors.  He has many of his afternoons and evenings free, so please don’t hesitate to give him a call and stop on in. 


Friday, June 3, 2016

Update - June 3, 2016 (Home!)

This morning started in Duluth at Essentia Health St. Mary's with a mix of the appreciated appearances of cheery visitors and the harsh review of all the bad news.  This afternoon we reimagined Kurt's home, and thanks to "many hands," things moved.  This evening ended in the familiar embrace of a comfy leather couch with chips and salsa in the company of family and friends...and his own bed.
 Kurt is back home, and a small force of committed allies intendeds to keep him here.  Ring him up and pop in for a visit.  :-)

Wednesday, June 1, 2016

Update - June 1, 2016

When I went down to hang out with Kurt yesterday, I found him in poor spirits.  Obviously that saddened me terribly, so we had a long talk, and he expressed his deep frustration with the continuing disturbances to his vision and his inability to see clearly.  I decided to read to him the many kind words and lovely comments that have already appeared on this blog and the related links on social media - because he hadn't yet been able to see them on his own - and that brightened his day...a LOT.  On behalf of my brother Kurt and our entire family, thanks SO much for the flood of support.  We're all touched beyond words.

After the unfortunate delay related to the complex and (as we're learning) extremely UNcommon nature of his cancer, it wasn't until yesterday's analysis of the MRI conducted on Monday that Kurt had a comprehensive diagnosis clear enough to allow the formulation of a treatment plan, and he met with the radiologist today.  He had a CT scan for the purpose of mapping a plan of attack, and he hopes to start radiation and chemotherapy as early as Monday. 


He also met with a doctor of physical therapy, and we're all working on a plan to get him home as soon as possible.  I intend to stay with him for the first couple days, and my sisters and our dad are making plans to live with him in shifts as long as is necessary.  I opted to go first so that I can drink all his whiskey and raid his 'fridge and freezer in advance of the arrival of my other family members.  Kurt laughed at that idea, so...I'm assuming it's ok.  ;-) 


As of this update, he is still in room 8241 at St. Mary's (Essentia) in Duluth.  Feel free to drop him a line, and we'll keep posting updates.  Thanks Again.  :-)