While I was at Physical Therapy for my right shoulder, Dr. Verstovsek's clinical nurse, Cathy Lewis, called to speak with Joe and me. Since Joe was at home working in the yard, Cathy would call Joe after speaking with me. So after a week of waiting, Cathy had communicated with INCYTE. INCYTE said that Joe have to be off the INCYTE while on chemotherapy but there was no down time needed before he started chemo. Cathy advised Joe to decrease his dosage of Incyte, the trial drug for Myelofibrosis, from 15 mg twice a day to 10 mg twice a day for a week. The next week following to decrease it to 5 mg twice a day with the last day being the day before he starts the FCR chemotherapy on 10/12 at MDACC in Houston.Once he is off chemo then he could start the INCYTE again for the myelofibrosis.
While I was in the parking lot after getting out of physical therapy, Joe called and stated that his sister Rick and Donna would meet us for lunch since they were in the area. Rick and Donna had been out to Joe's and Donna's Mother's grave in Decatur and had put a white stone border around the tombstone to prevent the cemetery's lawn mower from nicking small pieces off the tombstone. Donna took pictures of the tombstone and it really looks so neat now. Martha would be pleased.
I met all three of them for lunch at Enzo's Pizza in Tucker. We started to sit outside but the yellow jackets chased us in. I told all three of them what Cathy said about coming off the Incyte and I gave my opinion that Joe should be totally off of it for 4 days prior to getting the chemo but that it is Joe's decision, Joe stated that he would call Cathy once we got home. He did. He took it all at face value and instructed me not to speak or ask questions. After he hung up, Joe told me that he would do what they instructed him to do. Joe does not like to make waves or speak up. He is afraid that they would deny him the Incyte in the future which makes him feel good and have a good quality of life. It is Joe's body and he should make those decisions but I feel that my plan is safer. We shall see after we have more quiet time to talk.
I will write later tonight about the lighter aspects if living life as full as we can make it.
Ciao,
Bonnie
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