Arb and I met with Dr Lonergan this morning. He is a compassionate and brilliant man, the perfect combination for the person in charge of your loved ones life. We had a frank discussion looking at immediate needs and long term prognosis. His immediate needs involve his confusion and his difficulty swallowing. We addressed those issues then discussed immunotherapy, the pluses and minuses and other possible options.
We decided to start it (Optivo) right away. The positives outweigh the negatives. He has a 1 in 3 chance in this therapy prolonging his life. Without it Dr estimated Guy has 4-6 weeks to live. As our sweet boy Matt said ” Dad will be that 1 in 3 Mom” like the stubborn man we all know. Then we went upstairs and he got his first dose. He will get an infusion of Optivo every 2 weeks. Good to have insurance as this drug costs 200,000 a year!
During his infusion he got really agitated and confused and kept wanting to leave with the IV in his arm. I talked him down several times and regretted that I didn’t put his Ativan(for anxiety) in my bag. He fell asleep when it was almost over, like the little kid on the plane that cries the whole flight then falls asleep as the landing gear goes down.
So here we are, back at home. Kate and her BF, Tiluck, are here and made dinner (and did the dishes) Guy wandered around a little, wouldn’t eat or drink and now is asleep again. This is so heartbreaking and maybe a blessing. He does not realize how sick he is. We circle around him in support and we know that you are also part of that circle.
Matt and GF, Gwen, are driving down from Seattle tomorrow and his buddy forever, Mike, is coming Saturday. Then brother Pete comes on Sunday. He and sister Dana plan on alternating weeks here as long as need be. Everybody is asking what we need and right now we don’t need much. Our friend Myrna will start/ meal calendar as our needs become more apparent. We love you all and feel the love and prayers coming from around the world for this man I love with all my heart.
Until I have more news or a need to write,
Keep him in your prayers.
P.S. Guy does not qualify for clinical trials due to his current condition.