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The Beginning

January 21, 2018

 

This photo was taken August of 2001. My parents gave us a party in Gladwin, Michigan after we eloped! I was newly pregnant with Mare. What a beautiful trip it's been. 

 

I walked into the hospital today and it struck me that Bruce has been a patient here for the better part of a year. Green Hospital has been home.

 

We’ve seen 4th of July fireworks on television, Halloween ghosts hanging from the ceiling, colorful Thanksgiving turkeys scattered throughout the nurses station and twinkling Christmas trees propped up in corners. Gold and silver stars in doorways helped ring in the New Year, and now, red and pink glitter hearts are adorning the halls of 3 North. It’s been a long road.

 

New tumor development brought Bruce back to Green after a two week stint in rehabilitation. In rehab he walked (with help), he learned to operate a wheel chair with significant speed and developed a daily routine as he worked to regain a little normalcy. Then it hit. The pain in his spine that is so unforgivingly familiar. 

 

Two new tumors developed high and low on his spine sending him back to the radiation table. Thankfully Myeloma is very responsive to radiation and his pain subsided. He's made more than 50 visits to that table.

 

Just after the new year, his plan was to return to rehab in Encinitas when he was delivered the biggest blow yet in his fight against this aggressive cancer. The right side of his face went numb and within a day he found it nearly impossible to chew his food. New neurological symptoms developed in his face, tongue and mouth. His face was quickly becoming paralyzed. Again, he's back on the radiation table. 

 

Scans of his brain don’t show any mass or tumors, however a spinal tap indicates that he has myeloma plasma cells in his cerebral spinal fluid. As of today, he’s had two full brain radiation treatments and he’ll receive one or two more next week. His symptoms have improved giving him some relief, but as the doctors have expressed with deliberate intent; the relief won’t be sustained and each patient is unique in maintaining cognitive function. 

 

He’s doing well. Really well. As we all know, he's a fighter. Anxiety absolutely creeps in, but somehow that incredible brain of his wraps around everything he's dealing with and he continues to remain positive. He’s determined to go back to rehab for a couple weeks and then finally home to Gage Drive. He’ll continue to receive a chemo cocktail, some of which has shown results of crossing the blood/brain barrier but with no significant data on durability. 

 

Bruce wants to explore medications that haven’t been widely used or approved, so like a tenacious pit bull, I am hunting down another clinical trial, or at the very least experimental drugs. Surprisingly, one exsists and with the help of our doctor we will attempt to explore options. Perhaps it’s a way of coping, but if we don’t have a plan, we don’t have a fight. 

 

To learn more:

http://www.bloodjournal.org/content/128/22/2118?sso-checked=true

 

I'd like to distribute gas cards to my friends for driving the I-5 more than they could have ever imagined. I complain daily about one thing or another and yet those of you supporting us daily NEVER log a complaint. It's unbelievable. Daily dog walks.UberEats, food, groceries, name it and it's at our doorstep. You have ensured our girls won't go to school without a lunch or at the very least some good snacks. Mare, Charli and I were sharing a box of tissue for toilet paper, when I returned home in the evening, there was a 24 pack in my bathroom. How do you do it? All of you. God Bless You.  Your notes, emails, deliveries and gigantic hearts keep us from falling through the cracks. It's going to take a couple lifetimes to repay your goodwill. Our daughters will know the power and love a community can give. They will take this lovely, giving, generous community of ours on their life journey. 

 

 

“Most things will be okay eventually, but not everything will be. Sometimes you'll put up a good fight and lose. Sometimes you'll hold on really hard and realize there is no choice but to let go. Acceptance is a small, quiet room.” 

― Cheryl Strayed, Tiny Beautiful Things: Advice on Love and Life from Dear Sugar

 

 

 

 

 

 

 

 

 

 

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