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Out of the Blue

Stay by my side (and laugh with me) as I navigate this crazy turn of events. There might not be lemonade to be made from these lemons, but I will sure try!

Latest journal entry

Posted 2019-11-10T18:35:28Z

November 2019

Dear Friends,

Last August marked a year since I was diagnosed with Glioblastoma Multiforme. The daily effects of my “out of the blue” condition continue to mount, and as you might expect, there are often more questions than answers. I know that many of you want to know how I am, and as a start, here is something written by friends after they visited me in Maine at the end of June.

“How did we find Beth?  Characteristically indomitable is a good description.  She was so happy to see us and welcomed us with smiles and open arms.  Yet the heavy medicines are taking a toll.  The after-effect of last fall’s radiation is some loss of sight in her left eye, which is somewhat limiting her depth perception and, which in turn affects her balance.  This means she uses a cane or a walker when she feels the need. She is more tired than she would like to be, but recognizes she needs to pay attention and sleep when she is fatigued. The steroids induce puffiness, which she doesn’t like (who would!), but understands both that these are normal side effects and hopefully will be short-lived.”

So where am I now at the beginning of November?  It is likely that the side effects of the drugs I am taking, combined with whatever is going on in my brain, have made me more unsteady on my feet, more tired, and sometimes somewhat distractible-  none of which I like!  I am also seeing less well, which is disturbing. The good news is that, with each scan, there does not yet seem to be much change in the growth of the tumor. I am grateful for this, but every 2 months, when I have a new brain scan, there is a knot in my stomach as we await the results. Last week, I did have an MR! and am happy to report no new growth.

John and I have continued to fill our lives with family and friends. In September we went to the wedding of my brother George’s daughter, Katie, in San Francisco.  It was wonderful to be there and to share in their happiness.  Also in September, Stu, Tanya, Lexi, Sammy, Andrew and Jen visited us in Maine.  The joy that those little ones bring to all of us is immeasurable. Our plans for Thanksgiving are to be with our combined families in Fort Fairfield, Maine, where John grew up and his mother still lives.  Christmas will find us with family and friends in Jackson Hole.  So much to look forward to!

I will forever be grateful for the kindness and support of my family and friends during this time.  John remains steady, stoic, sensitive, sensible and amazingly funny as we negotiate this present reality and look at our lives together. We both rely on his sense of humor and kindness. John, Andrew, Stuart, Tanya, my beautiful grandkids, my sister Dorrit, my brother George and their families all bring me such happiness. It’s with a warm smile that I think about their bright futures.  Friend me on Facebook if you would like to be inundated with family pics.

As of today my right eye is experiencing some loss of vision.  I’m taking steroids to hopefully stop and possibly regain some of the vision loss in my good eye.  There are no guarantees it will help but we remain hopeful.

My eyes themselves are in perfect working order.  The problem is radiation exposure to the optic nerve.  The radiation therapy happened over a year ago but as is common with over exposure to the optic nerve, it can take a year to show these negative results.  

Thank you for your concern, your kind understanding, and for keeping me in your thoughts.  I think about you often.

Much love to all,

Beth

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