We had a busy afternoon on Wednesday with Susan getting a blood test, a flu shot, and a chiropractic adjustment. Along with her six-week CCNU chemotherapy schedule, she needs blood tests on weeks four and five to make sure her counts are not declining. Her infectious disease physician at UCLA recommended the traditional flu shot now and the H1N1 vaccine at his office later this month when it's available. With her weakened immune system, we decided to do what we can to avoid the flu and will get the vaccines.
Over the past few weeks Susan has not improved much, but thankfully has not worsened. Her greater need for help compared to several months ago required us to bring back a professional caregiver from Sheridan Care part-time. Cynthia worked with Susan briefly last December and returned to our home last week to help with morning activities Mon/Wed/Fri. Susan's situation is so much about transitions, so when increased lifting raised the threat of back problems for some of our volunteer caregivers, it was clear we were getting to the limits of their capacity. With that decision came the acknowledgement of a decline – but that's how it is. Managing a progressive disease like glioblastoma can trouble your emotions. One decline can so easily lead to another, so just one setback can create a sense of dread. But we've found it's much better to live in the realm of the now and the known and avoid the foggy extremes of the what-may-be. Susan is doing okay and maintains her sweet nature and positive outlook. God gives us grace, strength and peace for today, so we'll leave it at that.
During one recent span when Susan was extremely tired and didn't feel well, she slept over four hours on a Sunday afternoon and needed a two hour nap the next morning when I was home with her. After lunch, I put her to bed again and prayed with her before she went to sleep. She said, "I wish I could take the time to tell you why I love you, but I'm too tired…I just love you because you're you and God made you to be very special." And I love my Susan.
4 comments:
Thank you Mike for making me a part of your journey. I pray for Susan, for you and for your beautiful children. Each time I read your personal entry, I am reminded of just how miraculous each day is. The journey is made more beautiful with the amount of love that you all obviously have for one another. : ) Linda Taylor
No flu shots. Apple cider vinegar, probiotics, Vitamin D3, Vitamin C, Vitamin B17, colloidal silver, odorfree garlic, all are natural!! anti-viral/anti-bacterials, boost the immune system!! don't kill it. All of those will do you better than chemicals and poisons. God given substances not man made money makers.
Mike,
Thank you for taking the time to let us know what is going on with Susan. Thank you for taking the time to share your honest reflections. Thank you for sharing some of the specific stories that open the Kingdom of God to us. I'm grateful you have opened this journey up to us.
Michael,
Good to hear an update. Sounds like Susan is getting excellent care at UCLA.
Jennifer Neisz
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