So today was my first clinic visit after the transplant. I had to be in Boston at 730 am so I left my house at 5:05 am. I never get up that early and I stayed up too late watching nurse Jackie. Needless to say, I was very tired. And I can no longer go to Starbucks.
I was early to the appointment. They drew my blood and then I had to wait an hour to see the nurse. My doctor is out of town. I saw her and she said my counts are doing what they are supposed to and are on the way down. I have to stop my lovenox shots because my platelets are getting too low and I'm just about neutropeniac. She looked at a rash I has on my chest but it was probably from tape. I also told her sometimes my eyes are itchy but she said it was too early for graft v host. She said engraftment will occur between day 10 and 14. I needed to get IV magnesium and the nurse warned me it makes some people really hot. I fell asleep right away and thought I was just hot from the warm blanket but it was definitely the magnesium. She called me this afternoon and told me I had to increase the tac and rap (immune suppressants). I wonder why it keeps on going up. She said I will most likely need platelets or blood transfusion on Friday. I am not looking forward to these early morning visits.
I drove home in a snowstorm, again! It ALWAYS snows on days I have to go to Boston. Thank The Lord for my traverse &
Good tires. I'm also making progress on financial assistance and grants. I got approved for the LLS co pay assistance fund. That will help with my $300/month prescriptions. My oncology bill keeps going up every time I get it. I got $100 gift card to stop n shop from the American cancer society. The LLS also approved $100 that I have not received yet. I do not know why after all these years I have never applied for any of this. It could have really helped me out. I wish more awareness was out there for patients and the options available. It has been really hard for me to research all of this and connect with social workers while ill. Especially now when I cannot go in public.
Thank you to Jeff for the sandwich bag trick for covering my dressing to shower. It kept me dry two days in a row! The nurse said I could probably get the Hickman out in a couple weeks. Really looking forward to that!!